Her titles held were numerous — business woman, wife, mother, sister and friend but Deirdre Bain never thought she’d add lupus patient to the long list of titles that defined her. the 47-year-old mother of four remembers how the chronic autoimmune disease just snuck up on her like an unwanted visitor who kept trying to get her attention but she kept ignoring it until she had no choice.

Bain was diagnosed with the disease in May 2010, but it had been more than a year earlier when her symptoms presented themselves. She noticed her face swelling and rashes on her ankles. She went to a dermatologist seeking relief, but the rashes kept returning. Eventually by September, the rashes that were purplish in color had started to pop out on her face as well. and the joint pains compounded the problem. She attributed it all to aging.

“I never thought my problem was anything too serious. I was convinced that something was irritating my skin so I thought maybe it was my little house dog so we put it in the garage but the rashes still came. Then I thought it could be my detergent and we changed from using powder to liquid and I would rinse the clothes twice as an added measure. But I still broke out and the rashes got progressively worse.”

Bain realized something was increasingly wrong when her symptoms upon returning would be worse. Her rashes had gone from purplish to being dark patches on the tips of her ears, on her arms and upper back.

It only occurred to Bain that something may be medically wrong with her when a sibling who had been diagnosed with lupus 11 years prior questioned her strange appearance.

Lupus occurs as a result of white blood cells attacking important organs and cells in the body due to not being able to differentiate between healthy and harmful cells. She was diagnosed as photosensitive which means she has to avoid being outdoors between 10 a.m. and 4 p.m. when the sun’s rays are at their strongest. She has had to curtail attending her children’s sporting activities.

Upon hearing her diagnosis, Bain’s first thought was that her life was over. She was nervous, afraid, depressed and worried. She felt she had been given a death sentence. the fact that she could get a second opinion she said helped her cope. After doing a battery of tests she was officially diagnosed with lupus.

Since her diagnosis and prescribed medical treatment Bain’s skin eruptions are more controlled and her internal organ inflammations are also being managed. She said her joint pain is minimized, she no longer has shortness of breath and now knows the importance of putting herself first.

Because of her experience with lupus, Bain said one of the biggest lessons she’s learnt is that it is sometimes important as a person to care about yourself more than other things or people.

“I love my family dearly. I have done all I can to put them first and ensure they do well, but it’s doing that and not making time for myself and my health that could’ve cost me my life. I remember before I forced myself to see a doctor I didn’t want to leave them for a moment. But I saw that I had to do it and had I not done so I don’t know what would have happened. I may not have been there for them at all. My health may have deteriorated or worse. so I learnt that I need to put myself on the front burner sometimes. Your health is a gift to you and yours. you are no good to them unhealthy or gone. so you have to take care of yourself. That is what I learnt the hard way.”

She now is on top of her health and ensuring that she is there for her children for years to come.

Lupus is an autoimmune disease in which the body’s white blood cells cannot differentiate between healthy and foreign cells and as a result attacks important cells within the body. the most affected parts of the body include the brain, kidneys, joints and skin. But the most defining mark in lupus is usually the butterfly rash that spreads across the patient’s nose.

The illness occurs more commonly in females than in males with a ratio of 11 females to one male, according to Dr. Patrick Whitfield who works out of the Oxford Medical Center. He said the disease affects women in their childbearing years normally in their 20s and 30s. In the United States, statistics show 52 cases per 100,000 are diagnosed with lupus. With this in mind the physician says if the Bahamian population follows a similar trend it is likely that with a population of about 400,000 that over 200 people are diagnosed with the illness.

Like many chronic diseases, lupus sometimes takes a while to be recognized and properly treated according to Dr. Whitfield. He said this is because the symptoms can be mistaken for other illnesses and as a result sometimes people underestimate their problem. He said the constitutional symptoms of lupus include fatigue, fever, joint pain, weight changes, muscular and skeletal pain (joints of the hands, wrists), skin changes, photo sensitivity and hair loss.

“Even though you may have these symptoms, they may very well not be lupus, which is why to be sure you have to get a doctor’s diagnosis,”?he said.

Dr. Whitfield said that although Lupus can seem depressing and is very painful, the mortality rate for this disease is relatively low. there is an 80 percent chance that patients will make it to at least 15 years after diagnosis. also with regular care and treatment, mortality is also greatly reduced. however, there is a 50 percent chance that people with lupus will suffer from kidney disease, which is difficult and if it leads to kidney failure it can decrease their life expectancy. He also said that reports show that about a third of all lupus patients in the U.S. died below the age of 45, but even so chances were still good for people with the disease to live a relatively normal life if they are on the right medication and are vigilant about their health.

If lupus is left unmanaged people run the risk of developing symptoms that affect the kidneys and lead to failure with each new relapse, said the medical practitioner. Neuro-psychiatric features like seizures, psychosis with hallucination, delirium and meningitis can also occur. Sometimes antibodies can attack the spine so patients can develop a weakness in their lower body making it difficult to walk. Strokes can also happen as well as a cognitive disorder similar to Alzheimer’s. Untreated patients or those who are lax in their follow-ups, even with a relapse can eventually get lung and heart diseases like pleurisy or pericarditis respectively which are illnesses where the linings of the organs are inflamed.

Dr. Whitfield said early treatment can decrease the damage that the disease can cause and allow a person diagnosed with lupus to live a normal life. He said it’s a disease that should be taken seriously.

Due to her own life changing experience, Bain has founded a non-profit lupus group called “Lupus ME? Bahamas”. She said the goal is to bring awareness to the public about lupus. the group is not a support group as much as it is about informing the public about the illness and raising funds to help lupus patients said Bain.

Lupus ME? Bahamas (which is not affiliated with Lupus Bahamas 242) will stage a walk-a-thon on Saturday, May 26 starting at 6 a.m. from Grace and Peace Wesleyan Church in Winton themed “Walk the Loop” to encourage lupus patients, supporters and exercise enthusiasts to come out and have a good time while learning about this autoimmune disease.

“My goal is to get people to be proactive about this thing,” said Bain. “I wasn’t aggressive in finding out about this illness when I was diagnosed and this can be a big deal for others whose illness can be worse. I want people to be aware of it and be understanding. I hope to be able to raise funds through different fundraising events to help support lupus patients who are in need of assistance to cover things like medical treatment. It’s a simple thing but it makes a difference and I hope to see this grow in years to come.”

To register for this event email This e-mail address is being protected from spambots. you need JavaScript enabled to view it or call 364-5608. for more information on “Lupus ME? Bahamas” fundraising and information group, visit lupusmebahamas.com.

By Brian Johnson & Martin Banks – 27th April 2012 It goes without saying, that chronic kidney disease and its treatment have an enormous impact on patients’ lives; it also entails significant socio-economic costs EU member states are spending around two per cent of their total healthcare budget on dialysis treatment, yet dialysis patients make up only around 0.2 per cent of the population. National governments may not be spending their budgets wisely

CEAPIR vice president mark Murphy

a patient survey, like the one being discussed today, is one way of involving patients and allows us to focus on areas of action within the heath service

CEAPIR vice president Lars Engberg

Belgian MEP Frieda Brepoels has called for more to be done to enhance patient choice and access to treatment for people suffering from kidney disease.Brepoels, speaking at an event in the European parliament on Thursday, described the disease as a “silent epidemic” and urged EU and national policymakers as well as healthcare professionals to “work together” to make sure that those suffering from end-stage kidney disease receive, “the right treatment at the right time”.she told the debate, jointly organised by the Parliament Magazine and the European kidney patients’ federation (CEAPIR), that incidence of the disease, which can have a severely debilitating effect on sufferers, is set to double over the next decade.Information and treatment choiceThe roundtable debate heard evidence from several speakers involved in the production of a major Europe-wide survey highlighting widespread differences in the provision of information and treatment choice for kidney patients.the CEAPIR survey, entitled, ‘Unequal treatment for kidney patients in Europe’, found that a quarter of end-stage kidney disease patients did not feel involved in the decisions made about their treatment choices.It also found that there were stark differences and inequalities of treatment options across the 12 European countries that took part, with only 15 per cent of German patients surveyed saying they felt that they had received proper training or education on managing the disease against three quarters of those surveyed in Finland.Brepoels, a member of the parliament’s public health and food safety committee, said, “It goes without saying, that chronic kidney disease and its treatment have an enormous impact on patients’ lives; it also entails significant socio-economic costs.”Like many other chronic diseases, kidney disease is treatable, but not curable. unfortunately, we see though that many patients are only referred to a kidney specialist when confronted with kidney failure and requiring dialysis. At this stage preventive measures are no longer effective and a lot of vulnerable time is lost.”Brepoels added, “Chronic kidney disease is a silent epidemic; in many cases affected persons are not aware of their condition because the disease often develops without symptoms.”Treatment optionsTransplantation is seen as the ‘gold standard’ for treating the disease and is recognised as the best option in terms of quality of life and patient survival as well as the most cost-effective treatment for national healthcare authorities.however because of a shortage of donor organs and suitable living donors, kidney dialysis is still the most commonly used treatment.however, despite the availability of a home treatment procedure called peritoneal dialysis (PD) almost 90 per cent of patients currently use Haemodialysis (HD), usually at a hospital or clinic.from a patient perspective, PD is seen as more flexible allowing patients to take a greater role in managing their care.The need for a survey on patient choice“Patient involvement has a positive effect on quality of life and patient satisfaction,” CEAPIR vice president Lars Engberg told participants at the event.”Patients have a different perspective, so their involvement can affect their clinical outcome and help complement the knowledge of health professionals.”"A patient survey, like the one being discussed today, is one way of involving patients and allows us to focus on areas of action within the heath service”.Engberg added that polls such as the recent CEAPIR survey can especially benefit patients as the decisions they make on their treatment could have a “very strong impact” on their daily lives.Hard data on treatment options was essential if organisations like CEAPIR wanted to better promote the interests of kidney patients said Engberg. “We need to understand if we want to better represent patients.”The debate heard of the moving experience of Peter Fahy, a 20-year-old Dublin-based kidney patient who spoke of the way the disease had transformed his life.Fahy opted for home-based PD dialysis (normally done as he sleeps) as he felt it would be less disruptive and allow him to lead a reasonably normal life as a teenager at home rather than involve several trips a week to a hospital.he said, “I have been receiving treatment since the age of 15 but just hope I can lead as normal a life as possible.”"It’s important that people are informed of all the options so they can choose a treatment that suits their lifestyle.”Findings and challengesKajsa Wilhelmsson, a senior councillor with PA firm Edelman, presented details of the survey, which was supported by Baxter Healthcare, saying that it illustrated the need for “improvement” in most countries.the report found that access to renal care for kidney disease patients was “unequal” and “erratic” with one in five patients polled saying they had not received information they found useful on dialysis treatment options.one in three patients surveyed said they were not able to choose their treatment method or were unsure about how much their choice counted, while less than half said they believed that they were only told about alternative treatment options while already on dialysis.the key challenges identified by the poll were, said Wilhelmsson, “early detection, equal quality, access, information and the education of patients”.An EU wide treatment registerFurther comment came from mark Murphy, also a vice president of CEAPIR, who called for more effective monitoring of the treatment available to patients, including a possible mandatory, EU-wide register.he said, “There are significant differences in the cost of treatment for kidney patients between member states and this is something we want to see an end of.”Murphy added that the cheapest treatment was transplantation, which he said cost around the same as a year’s worth of dialysis. however, there are also sizeable differences in the cost of dialysis treatment.Around 90 per cent of dialysis patients use HD, which is mainly performed in hospitals. Murphy said that studies have proven that between 35-55 per cent would prefer to be treated at home if given the choice.”EU member states are spending around two per cent of their total healthcare budget on dialysis treatment, yet dialysis patients make up only around 0.2 per cent of the population. National governments may not be spending their budgets wisely.”"Home treatment is cheaper and PD is significantly cheaper because it’s done at home by patients”Murphy highlighted a number of what he called “barriers to optimal care and patient choice”, including affordability, accountability, health care professional and education, commercial bias geographical complexities, organ donation culture and the structural management of health services.On accountability, Murphy called for an EU directive on mandatory reporting to a European Renal registry which would help set Europe-wide standards of quality for renal replacement therapy (RRT).he argued that a mandatory register already exists for organ transfers across the EU, but, “we need to know the EU 27 numbers on RRT. a register has to become mandatory, there is a real need for good data.”Education and supportMurphy also called on the EU to take the lead in educating healthcare professionals in identifying symptoms and supporting those countries reporting low prevalence of kidney disease.he also warned against what he called commercial bias within the prescribing of treatments linked to services supplying those treatments for patients, saying, “we need to recognise and investigate commercial interests [in treatment choices for kidney patients]. We don’t let doctors prescribe and sell medicines, but do let doctors prescribe dialysis treatment and profit from that treatment.”Irish MEP Marian Harkin also warned of the dangers of commercial bias, saying that there was a need to ensure that there was no conflict of interest surrounding the running of treatment clinics.she said there was “great interest” in the issue of patient choice and access to treatment and in “what role [EU policymakers] can play” in improving patient advocacy.she added that “there is a need for good, robust information and perhaps we can add value by looking into issues such as whether there is a possibility to access funds for more research at European level through the EU’s seventh research framework programme”.Closing the debate, Murphy said, “We have come a long way on [patient choices and access to treatment], but there is still a long way to go. “Today’s discussions in the European parliament mark a big step towards equipping patients with information and securing patient choice and equal access to renal care, both at European and national levels.”Further reading here

The groundbreaking operation was detailed in today’s issue of the New England Journal of Medicine. Picture: AP Source: AP

• Man gets kidney handed down from two previous owners
• Surgeons re-implanted the partially-damaged organ
• The re-used organ thrived and damage was reversed

IN a medical first, a kidney transplant recipient from Indiana in the US was given a "recycled" organ that was handed down from two previous owners.

Erwin Gomez, a 67-year-old surgeon from Valparaiso, Indiana, received the kidney after its first recipient, Ray Fearing, 27, from Illinois, found that his body rejected the organ.

The groundbreaking operation was detailed in today’s issue of the New England Journal of Medicine.

Mr Fearing has a rare disease called FSGS, which causes damage to kidneys, and soon after the transplant in June last year, his new kidney – donated to him by his sister – showed signs it was being affected by his condition.

Doctors acted quickly, as the donated kidney posed life-threating symptoms to mr Fearing, and examined the possibility of re-implanting the now partially-damaged organ it into another patient without FSGS, rather than discarding it.

Mr Gomez was given the option of taking a twice-used kidney, or remaining on the waiting list for a completely healthy one. he accepted without hesitation, and two weeks after mr Fearing received the kidney, it was re-implanted into the father-of-five.

The re-used organ thrived in mr Gomez and just eight days after transplantation at Chicago’s Northwestern Memorial Hospital, tests showed that the damage to the organ was reversed.

Dr Lorenzo Gallon, mr Fearing’s doctor and medical director of the kidney transplant program at the hospital, said, "When post-surgery tests indicated that Ray was at risk of developing life-threatening conditions due to the reoccurrence of the disease, we had to remove the kidney before he deteriorated. The kidney however was still a relatively healthy, viable organ that could be transplanted into someone else without FSGS."

He added, "after numerous discussions to carefully consider this first-ever procedure, we presented Ray with the option to donate his kidney to someone on the national kidney waiting list rather than discarding it."

Mr Fearing, whose 21-year-old sister Cera donated the organ, was hopeful he will receive another kidney transplant in the future.

"It may not have been my time, but I am grateful that I was able to help another patient," mr Fearing said. "my day will come."

The surgeons involved in re-implanting the kidney said that as well as successfully recycling a FSGS-damaged organ, they had made "significant strides in better understanding" the cause of the condition.

By Rita Rubin

The original Yellow Wiggle is back, but he’ll never be free of the disorder that forced him to stop Wiggling five years ago.

Greg Page, 40, a.k.a. Yellow Wiggle, left the “The Wiggles,” the wildly popular kids’ singing group he helped found 21 years ago, because of symptoms related to orthostatic intolerance, a little-understood condition. in January, though, the Australia-based Wiggles announced Page had rejoined the group, set to tour the United States this summer.

And that was welcome news for Vanderbilt University cardiologist Dr. Satish Raj, a Wiggles aficionado who also happens to specialize in studying and treating the disorder that forced Page to pass his yellow “skivvy,” or t-shirt, on to replacement Sam Moran.

“The Wiggles have not been the same with Sam since Greg left,” says Raj, father of a 7-year-old daughter and 2 ½-year-old son. Raj has been known to sing Wiggles songs to his adult patients at the Vanderbilt Autonomic Dysfunction Center.( Autonomic refers to the autonomic nervous system, which controls automatic functions such as heart and breathing rate.) when he read of Page’s illness, Raj says, he emailed the Wiggles through their website to offer his services, but got a “no, thank you” in reply.

Page, who suffered from fainting spells, chronic fatigue and poor balance and coordination, according to the Wiggles website, was tested for a variety of conditions before doctors figured out he had orthostatic intolerance, “a beautifully vague term,” Raj says, that describes anybody who has trouble standing up.

“What Greg had sounded more like what we call POTS,” or “postural tachycardia syndrome,” a type of orthostatic intolerance, Raj says. Page is unusual for a POTS patient, Raj says, because four out of five sufferers are women, and only about one in five have fainting spells.

When POTS patients stand for as little as five minutes, their heart rate can jump up to 30 beats per minute, Raj says. They often have high levels of norepinephrine, the stress hormone that underlies the “fight-or-flight” response. and most have decreased blood volume due to low levels of two hormones, regulated by the kidneys,that promote salt retention and increase plasma volume.

Patients frequently report that their symptoms began following stressors such as pregnancy or major surgery, Raj says, and Page has said his got worse after he underwent hernia surgery.

Treatments include small doses of beta-blockers and increased salt and water intake to increase blood volume. That’s where a Wiggles song plays a role in Raj’s practice. “Gulp, Gulp, Drink Some Water,” he’ll sing to patients to encourage them to chug the stuff, especially before they get out of bed in the morning.

Page apparently is practicing what he sings. “My health is much better now due to having a greater understanding of the disorder (Orthostatic Intolerance) and how to manage it appropriately. It is not a curable condition and will always be with me,” he wrote on his website in February.

“There’s no doubt about it,” Raj says, “people have good days and bad days.”

On top of a much-reduced quality of life, comparable to that of kidney failure patients on hemodialysis, POTS patients have to deal with disbelieving doctors, Raj says. “Doctors often think that they’re crazy.”

One of his patients is a medical student who talks to undergraduates about her condition. Raj says the woman tells fellow students:  ”The worst part of this is if I didn’t have it myself, I wouldn’t believe me.”

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Fifteen-year-old Richard Kusi Yeboah lies on one of the hospital beds in the Renal Unit of the Korle-Bu Teaching Hospital (KBTH) with two flexible tubes inserted into the veins on his left arm.

He shrugs in his bed, as if to reposition himself from his posture of lying still, as blood passes through the tubes into a machine with special filters located close by.

He has to lie for three to four hours in that position for the machine to filter his blood and circulate it back into his body.

Richard’s kidneys are not functioning and must go through dialysis, a process in which a filtering machine cleans the blood to get rid of waste and unwanted water from the body.  

 “Sometimes I feel bad,” says Richard who has been on dialysis for a year now. “Sometimes I think that by this time I would be at home studying, but am on dialysis instead.”

Richard, a first year general arts student at Accra Academy Senior High School, has to go through this process three times a week if he is to continue living.

“He was eating one day after he had returned from school when he collapsed,” says Janet Donkor, Richard’s mother who takes care of him alone. “There was blood coming from his nose and mouth,” she says.

She says with the help of her neighbours, Richard was taken to the Amasanam Hospital where doctors diagnosed him as anaemic and referred him to Korle-Bu for further treatment.

“He collapsed again after he was discharged form Korle-Bu and was re-admitted for two weeks,” she says.

Janet says Richard was taken back to Korle-Bu because he once again collapsed and this time, “he chewed his tongue.”      

She says Richard could not walk and would not also respond when spoken to. “We had to carry him and put him in the car because he couldn’t walk or talk.”

Doctor’s reports showed Richard’s kidneys had been damaged and that he was suffering from End–Stage Kidney Disease (ESKD).  

“The doctors said they had to put him on dialysis, if they didn’t, he was going to die,” Janet says. “It was hard for me.”

Alarming Increase of Kidney Disease

The Korle-Bu Teaching Hospital recorded a total of 2,687 kidney cases at the out-patients department in 2011, against 2,131 cases in the previous year.

Dr. Charlotte Osafo, head of the Renal Unit at Korle-Bu and President of the National Kidney Foundation, says the difference in the cases represent a 31 percent increment.

She further says the unit has subsequently recorded an increase in the treatment of kidney diseases.

“People on dialysis in the unit increased from 225 in 2010 to 235 in 2011,” Dr. Osafo says.

Dr. Vincent Boima, a nephrologist at the renal unit, says 10 percent of hospital admissions at Korle Bu are due to kidney diseases.

Most people affected with the disease are between the ages of 20 and 50.

 “The young are being silently killed. these are people who are the productive group of society,” he says.

Dr. Osafo says the situation is worrisome. She attributes the increment of recorded kidney diseases to awareness creation which is making people report their situation at the hospital and not necessarily an increase in the disease among people.

“We have been having awareness campaigns to educate and sensitize the general public on the disease, so more people are coming to report their cases which formally were not happening,” she says.

She says doctors are also referring kidney cases at their early stage to the unit as a result of the awareness campaigns.

Kidney disease can be caused by the progression of diseases as diabetes, hypertension and the inflammation of the kidneys.

Dr. Osafo says other risk factors include high cholesterol, effects of some drugs and other systemic conditions such as prostate problems.

“These are all risk factors that can make the (kidney) disease progress very fast,” she says.

She says the unit uses preventive measures to halt the progression of those diseases when detected at its early stage.

“For hypertension, we advise patients to modify their diet, reduce salt intake and take medication to lower blood pressure,” Dr. Osafo says. “If you have diabetes, we will encourage you to bring your sugar down and bring it under control.”

Dr. Boima says most people are aware they have these health conditions that can trigger kidney disease yet do not visit the hospital for regular check-ups.  

“Even those who are aware (that they have the disease), how many comply with medication? how many go to the hospital regularly?” he asks.

He says most of the people come to the hospital “crash landing” after the disease, which is less symptomatic in the early stages, has progressed.

“By the time they start to show symptoms, it is beginning to be an emergency and we are forced to put them on dialysis,” he says.

Dr. Boima adds that although it is appropriate for the disease to be detected at the early stage so health officials can institute corrective measures to delay the progression of the disease, people come in at the end stage.

“You are hopeless because you see somebody dying and you know the person is going to die,” he says. “They would have a better chance if they came to the hospital earlier before the disease progresses.”

Treatment Cost

The dialysis unit at Korle-Bu has 135 patients on dialysis. each patient must have at least three to four sessions per week to function normally.

Patients must pay a deposit of GH¢5,000 before starting dialysis treatment, which cost GH¢140 per session.

Dr. Boima says this is to give the unit the assurance that the patients will keep up with the treatment and keep paying in the long run.

“If you start dialysis, you need to be able to keep it up because if you stop mid-way, you have wasted money and you are going to die,” he says.

He says majority of people affected with kidney failure cannot afford renal replacement therapy. That comprises dialysis and a kidney transplant, which can cost up to GH¢40,000.

“Some families have lost everything, all their belongings and property to pay for the dialysis and then they lose their loved one when they can no longer afford the treatment,” he says.

Dr. Osafo says the people who are currently on dialysis at the unit are people who can afford the treatment.

She explains that being on dialysis is not the actual treatment for kidney failure but kidney disease.

“For kidney failure the only treatment is a transplant,” she says.

She also says the unit has lost a lot of patients because they are sometimes too weak to do regular kidney dialysis and subsequently, a transplant.

Janet Donkor, like the majority of the families who do not have the money for dialysis and a transplant, solicited funds from organizations to enable her son to undergo his treatment.

“For the past year I’ve struggled to take care of him,” she says.

She is however hopeful one of her kidneys, which she will be donating, will save her son’s life.

National Kidney Foundation

The National Kidney Foundation was established to create awareness and educate the public on kidney disease. it has held successful meetings and campaigns to sensitize the public on the need for regular check-ups at the hospital.

In addition to its awareness campaigns, the foundation has also helped finance treatment for people who cannot afford the renal replacement therapy.

The foundation has screened more than 2,000 people for the kidney disease in the past few years: it has also financed free medical check-ups for patients.

“We help pay for dialysis and antibiotics- especially chronic cases under the age of 30, we help with the initial dialysis,” says Dr. Osafo.

In spite of the foundation’s activities to help curb the issue, insufficient resources are limiting its activities.

Dr. Osafo says the foundation has some projects that are not being implemented because of lack of finances.

Dr. Boima says the unit’s 18 machines, each costing about €15,000, are under pressure. “In the near future, they will break down,” he says.

“We want to buy a sterilizer that can sterilize the artificial kidneys and also train people to use it,” Dr. Osafo says. “All these cost money.”

She says artificial kidneys can be re-used ten times if the unit has a sterilizer.

She encourages the general public to channel their donations and contributions to the foundation’s Ecobank Main Office Account Number 3034404971801 to enable it to save more lives.

She suggests organizations should bring their donations to the foundation and not directly to the patients because some patients prefer to continue with the dialysis than to undergo a kidney transplant.

A transplant is the only permanent cure for a kidney failure.

“Some of them come to my office after they have secured funding from these organizations and tell me they do not want to have the transplant anymore even though we have placed them on the transplant list,” she says.

 Dr. Osafo says that once the money deposited in the foundation’s account states the name of a particular patient, it will be used for that patient’s treatment.

Way Forward

Renal replacement therapy is not covered by the National Health Insurance Scheme (NHIS) for patients who have chronic kidney disease. That includes most patients in Korle-Bu’s renal unit.

Dr. Boima suggests government should “meet patients halfway” to subsidize treatment of the disease.

He also says civil society can help pay for the transplants. “Even saving one person is a help,” he says. “We probably can’t cover everybody (for chronic kidney disease) but should cover those who would get the greatest benefit from treatment.”

The Christian Council Micro-Financing Limited, the business arm of the Christian Council of Ghana, has initiated the ‘Save a Cedi to Save a Kidney’ campaign to provide a kidney dialysis center for the 37 Military Hospital in Accra.

Rev Dr.  Fred Deegbe, General Secretary of the Christian Council, says the initiative’s goal is to have a new kidney center where people can go in for kidney dialysis and eventually a transplant.

He says the public has responded well to the campaign.

“For me, what is refreshing is to get a call from London (on Rainbow FM) that Ghanaians over there in Britain and the US also want to join and give a cedi,” he says.

He says the council will extend the help to other regions in the country after the initial one at 37, to enable those outside the Greater Accra Region to also have a place for treatment.

Bertrand Eshun, head of operations and marketing at Christian Council Micro-Financing Limited, says the campaign requires the public to text the word “kidney” to short code 1962 on all networks to donate GH¢1 towards the center or deposit their contributions to the Ghana Commercial Bank Account  number 1141130008798.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                

He says the council is expecting to raise $500,000 to establish the center at 37 Military Hospital.

“We are hoping we can get funds to sustain the kidney center after its establishment,” Eshun says.

 By Jamila Akweley Okertchiri

When 6-year-old Angela Bushi’s organs started to fail, her family feared they would lose her – just as they had lost her 18-month-old sister Alicia to liver failure a few months earlier.

“When you see your children in this situation, and there’s nothing you can do, it is so hard,” said Angela’s mom, Valbona Bushi.  “We went through a lot.”

But today, Angela’s organs are functioning better than ever.  thanks to a team of geneticists and surgeons at Holtz Children’s Hospital and the University of Miami Miller School of Medicine/Jackson Memorial Hospital, her life was saved after she underwent a combined liver, pancreas, and kidney transplant – the first ever quadruple transplant of its kind performed on a child.

Initially born healthy, Angela developed type 1 diabetes when she was just a year old.  Four years later, she became even sicker, developing flu-like symptoms, which  eventually turned into fatal liver failure.

“This was kind of an unusual combination of acute liver failure and diabetes,” said Dr. Olaf Bodamer, director of the pediatric genetics program at Holtz Children’s Hospital, who eventually diagnosed Angela.  “We knew that her sister had died under similar circumstances, so we assumed that her condition was genetic.  When you go to the medical literature, the list of syndromes that came up to explain her condition was very small.”

Bodamer finally discovered the culprit – Wilcott-Rallison Syndrome (WRS), an extremely rare disease with only 60 known cases in medical literature worldwide.  Those with WRS have a multitude of health problems, including diabetes, liver and/or kidney failure, bone and growth problems, repeated infections and intellectual impairment.

And for the majority of children with WRS, the condition is typically fatal.

After finally diagnosing Angela with WRS, surgeons knew that if they were going to save her life, transplanting just one organ wasn’t going to cut it.

“The risk to her life was from three (different) organs – the liver, pancreas, and kidneys,” said Dr. Andreas Tzakis, chief of the liver/GI transplant program at UM’s Miller School of Medicine and Jackson Memorial Hospital, and one of the transplant surgeons who operated on Angela.  “If there was to be a solution, we knew we’d have to combine these (three different types of) organs into one transplant.  We had several consultations within the team, outside the team, and the parents; and collectively, we decided the transplant was the way to go.”

Angela was placed on a transplant list, and on December 29, 2011, she received the ground-breaking quadruple transplant.  Because of Angela’s small size and the combination of the organs needed, Angela’s new liver, pancreas, and kidneys all came from a single donor.  the organs were left in a “block,” almost as if they were all one organ.  

The surgery was the first to ever be performed on a child – and the first to be used to treat WRS.  Liver transplants had previously been considered to treat the disease, but surgeons never followed through with them for fear of complications with other organs.  but because the surgeons transplanted all the organs at once, the complications were minimized as much as possible.

Initially, Angela started to reject the organs – but the doctors were prepared and treated the issue with anti-rejection meds, and she has since fully recovered. she was discharged from Holtz at the end of February.

Angela no longer needs insulin treatment, and the only evidence of her innovative surgery is a slightly protruding belly, which houses two pancreases, a new liver and four kidneys.

The surgeons hope Angela’s story will not be the only one of its kind and that more transplants like hers can be done in the future.

“The surgery itself might benefit other children who might need this combination,” Tzakis said.  “It might give hope to children with this syndrome – that there might be at least one solution that can prolong their life.  For the first time, we have a sense of enjoyment about this whole process.   Seeing the child looking well and the family being relieved, this is the first time I feel joy for having done this procedure.”

The Bushi family, who live in Jacksonville, Fla., are also joyous to have Angela back home and feeling better.  they said they look forward to seeing Angela live a long and healthy life.

“She’s a normal child again, and we can do everything like normal parents,” Valbona said.  “She even wants to be a doctor when she grows up.”

Drive to spot cancer signs early

9:12am Wednesday 15th February 2012 in News

HEALTH chiefs in Bolton are to give away £100 shopping vouchers as part of new moves to beat cancer.

the prizes are being offered as an incentive to people to learn how to spot the early signs of kidney and bladder cancer.

the deal comes after the NHS struck up a partnership with supermarket chain Asda. as part of that deal, Asda is to host information stands while people visiting them will be able to win shopping vouchers by guessing the value of the contents of a shopping basket.

Campaigners will be visiting the Burnden Park branch of Asda next week.

the move is linked to a national Be Clear on Cancer campaign which aims to educate people on the symptoms of the two cancers so they can be spotted early, massively increasing the survival rate.

Jan Hutchinson, director of Public Health for Bolton, said: “Too often, we hear the sad news about people who lose their battle against cancer and we know hundreds of deaths could be prevented if it was detected earlier.

With campaigns like Be Clear on Cancer, we hope people will contact their GP sooner rather than later if they spot the signs.”

Campaigners will be at Asda in Burden Park on Tuesday, February 21 between 11am and 2pm.

more News stories

Drive to spot cancer signs early

9:12am Wednesday 15th February 2012 in News

HEALTH chiefs in Bolton are to give away £100 shopping vouchers as part of new moves to beat cancer.

The prizes are being offered as an incentive to people to learn how to spot the early signs of kidney and bladder cancer.

The deal comes after the NHS struck up a partnership with supermarket chain Asda. As part of that deal, Asda is to host information stands while people visiting them will be able to win shopping vouchers by guessing the value of the contents of a shopping basket.

Campaigners will be visiting the Burnden Park branch of Asda next week.

The move is linked to a national be Clear on Cancer campaign which aims to educate people on the symptoms of the two cancers so they can be spotted early, massively increasing the survival rate.

Jan Hutchinson, director of Public Health for Bolton, said: “Too often, we hear the sad news about people who lose their battle against cancer and we know hundreds of deaths could be prevented if it was detected earlier.

With campaigns like be Clear on Cancer, we hope people will contact their GP sooner rather than later if they spot the signs.”

Campaigners will be at Asda in Burden Park on Tuesday, February 21 between 11am and 2pm.

More News stories

When it comes to online law firm marketing, and more specifically SEO, there are several terms that are tossed around reverently: keyword research, website redesign, citations, and one of the most important terms, link building.

Link building is a fundamental, if not the most important aspect of search engine optimization. While keyword placement will get your law firm website noticed, it can only do so much in respect to a higher search engine ranking. it is true that keywords cannot fully work without link building, and the same applies to the opposite.

Link building is the process of communication; it is a form of public relations. when people talk about you, they will tell others about you and create a viral word of mouth. when your law firm has a blog, article, and/or press release that draw interest, either negative or positive, you will get links pointed to your webpages, to your social network pages, and to your local SEO citations. In short, link building is the key to a successful law firm marketing campaign.

We are committed to utilizing ethical link building tools such as:

• Article writing and distributions
• Press release writing and distribution
• Social networking
• Premium Directories (ie: Yahoo! Directory)
• Niche Legal Directories

Inbound links are the key to a strong ranking and a strong law firm marketing company is essential in getting those links.

Seventy-year-old Don Wright doesn’t believe in giving up without a fight. Since being diagnosed with multiple myeloma (MM), also known as myeloma, eight years ago, he has become a beacon of light for patients battling the crippling cancer of the plasma cells in bone marrow. While no exact cause has been found to lead to this disease, it does primarily affect elderly folks. the median age of diagnosis is roughly 70 years.

A picture of health, the retired American lawyer has used his passion for running marathons to keep physically fit, controlling the cancer with a clinical trial drug called pomalidomide to give himself a new lease of life. He has been on this drug since March 2008, with positive results. Prior drugs gave him little to no relief.

Wright spoke to Life following his speech at the 53rd American Society of Hematology (ASH) conference in San Diego late last year, where medical experts congregated to promulgate and analyse new treatments for myeloma suffers. He spoke candidly to the audience about how encouraged he was to see fresh developments taking place in the treatments for MM patients. a trial drug has worked wonders for him, he said with enthusiasm, offering him a life he would not have imagined a few years ago.

“I want patients around the world to be emotionally and physically strong to fight this disease,” said Wright. “Trial drugs might not be easily accessible to the masses and might not always work, but that should not put people off from looking after themselves both physically and emotionally.

”Pomalidomide, the trial drug, is working for me. It will not cure the myeloma but it keeps it stable. I want people in my shoes to be encouraged to live and celebrate life. I have a disease but despite that I have a wonderful life. Despite the odds, it is pivotal to have hope. At the conference, doctors talked about a cornucopia of treatments, which are at trial stage, so there is a lot of hope for new cures on the horizon. Life is there to be lived to the fullest despite the impact the disease has had on us both mentally and physically.”

Afterwards, he took time out to run a mini-marathon with a small group. He has competed in 55 marathons in 37 states, while his goal is to compete in 50 states. Wright was diagnosed with myeloma two weeks after running his first marathon in 2003. His doctor_ who gave him a five-year survival estimate _ was always supportive of his running which he believed would strengthen his bones. He decided to continue for the sheer enjoyment of pushing his physical limits to the next level. Admitting that with advancing age and the sickness, he is simply content with reaching the finish line.

Adhering to a healthy lifestyle is a must to boost your chances of fighting the disease, he said. Smoking, obesity and fast food should be kept at bay. Nutritious food is a must, organic is most advised. Exercise of all forms can lift people from depression and stress, he enthused with a twinkle in his eyes. Wright credits good emotional health to a supportive family, a wife and daughter that also participate in marathons with him.

The well-toned athlete calls them his pillar of emotional support. Wright concluded on a poignant note: ”I do realise that I don’t know just when the cancer might deteriorate. But for the meantime, my family and I are relishing the extra time that we have been given to be together. To make the most of it, we have been travelling and doing these running events together to celebrate life.”

Meanwhile, Dr Weerasak Nawarawong, president of the Thai Myeloma Working Group, who also attended the ASH meetings, said that while the experimental drug pomalidomide is not available in Thailand, it is important for Thai patients not to lose hope because many new treatments are being tested to find suitable cures. Judging from all the positive developments that are taking place in the field of blood cancer studies, there is reason to be optimistic about the future.

Despite being diagnosed with multiple myeloma, a treatable yet incurable cancer, Don Wright (foreground, right) has fought tooth and nail to keep it under control through a positive attitude and healthy lifestyle.

He said a number of updates were shared at the American Society of Hematology conference about the treatment of multiple myeloma. one which includes the next generation immunomodulatory drugs pomalidomide, proteasome inhibitors and carfilzomib. Patients taking these drugs, in addition to other experimental medication, tested in no increased toxicity.

In Thailand he said most MM patients are in the age bracket of 60-70 years old. Annually, there are approximately 150 new cases in comparison to 15,000 in the US. Dr Weerasak noted that while myeloma is treatable it yet remains incurable. important treatment advances, however, have developed in higher rates of remission and lengthier survival than were seen in the past. As experts attain a better understanding of the development and progression of this disease, targeted treatment strategies are generating further benefits.

He said that a routine blood screening can catch a number of myeloma cases while it is still in an asymptomatic state. the symptom at the onset of the disease for most Thai patients is bone pain. In those who have pathologic fractures especially fractures of the thoracic and lumbar vertebral bodies, it usually results in severe spasms and back pain. the anaemia, which may be quite severe, is the most common cause of weakness in patients with MM.

Dr Weerasak admitted that while Thailand has kept statistics of the number of myeloma patients through the years, it had not made an epidemiologic study of the disease as such. Due to lack of awareness physicians under-diagnose their patients, he noted. Epidemiologic studies in countries such as China and Korea have given him reason to believe that the number of patients with multiple myeloma in Thailand is increasing steadily.

To raise awareness the Thai Myeloma Working Group organises several functions to educate both physicians and patients on the disease. they also have a website (thaimyeloma.org/th) for patients to obtain information about multiple myeloma. He also hopes that in the near future, they will be able to set up supportive groups for myeloma patients to receive counselling.

Thai myeloma patients can expect medication that is approved worldwide.

”All the anti-myeloma drugs that have been approved for treating multiple myeloma are available in Thailand,” noted the veteran medical expert. ”The success of the treatment is as good as you would find in Western countries if only we can get access to novel drugs, which don’t come cheap. There are numerous determining factors that influence the positive outcome of the treatment. Few examples include age, the advancement of the symptoms and the duration of time that has elapsed before the patient gets the anti-myeloma therapy.

”Novel drugs also have no guarantee and can be expensive. so Thai myeloma patients’ biggest setback can be the ability to purchase these drugs. the government does not also have a big enough budget to cover the expense.”

Dr Weerasak said doctors are looking for appropriate drugs that can be used to maintain the status of remission which is quite successful in some of the sufferers.

He explained that clinical trials are research studies of new treatment methods. Even if you are newly diagnosed with multiple myeloma, he said you might be offered a clinical trial drug. the early phases I and II of the clinical trials focus mainly on a safe dosage level, side effects and type of cancer to ascertain

that the new drugs are working. the phase III trials then determine if the patient is making better progress from the currently available treatment they have undergone. Patients might have to take some risks, such as suffering from adverse effects, so it is up to them to continue or discontinue with the treatment.

Asked to share common causes and symptoms of myeloma, Dr Weerasak explained that as there is no exact cause of MM, there are several risk factors that could lead to the disease. Repeated exposure to chemicals such as pesticides, benzene and spraypaints have been proposed as potential causes.

”Most people with MM have no known risk factors other than age,” he said. ”Scientists have identified a few risk factors for instance, obesity, exposure to radiation or chemicals. Not everyone with risk factors gets multiple myeloma. Myeloma is slightly more common in men than women, and most people are diagnosed in their sixties.

”Symptoms could include frequent low back pain. the pain could nonetheless occur in other areas like ribs, arms, legs and pelvis.

”For patients that develop anaemia, they will have paleness, dizziness, weakness, fatigue and shortness of breath. Infections such as pneumonia, sinusitis are frequent. Weakness or numbness in your legs might be the result of spinal cord compression. Unexplained weight loss is common. High calcium levels cause excessive thirst, nausea, constipation, loss of appetite and confusion. Swelling, especially in the legs, along with weakness are symptoms of kidney failure.”

Best prevention methods are to keep healthy through having a good diet, exercise to enhance your physique, observe good personal hygiene to prevent infection and avoiding smoking and alcohol. Exposure to toxic chemicals and radiation is believed to increase the risk of multiple myeloma and other cancers, so keep this in mind and avoid being around these substances for long periods of time. Regular medical examinations for early detection and timely treatment is always advisable.

Photojournalist Ed Kashi captures the lives of patients suffering myelodysplastic syndromes, a group of closely related but diverse blood cancers, which also affect the aged.

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