What you don't know can kill you!

Saturday, November 07, 2009 8:58 PM

News

A family turns its pain, tears into a weapon against rare disease

BY KIMONE THOMPsON, Senior reporter Special Coverage Unit specialcoverageunit@jamaicaobserver.com

Wednesday, May 27, 2009

THEY say what you don't know can't hurt you. But in the case of the Creary family, who lost a loved one to the little known disease vasculitis, ignorance proved deadly.

A panel of doctors made presentations at the vasculitis press conference. From left are Dr Michael Banbury, general practitioner and president of the Ricardo Lee Vasculitis Foundation; Dr E Nigel Harris from the UWI and Dr Leon Vaughn, ophthalmologist. (Photos: Bryan Cummings)

If they had been better guided by the medical doctors from whom they sought attention, their only son Ricardo Lee could have had more time with them, or at least have been more comfortable in his last days, the family is convinced.

"That has been painful, very, very painful because we sought the best medical treatment ever," says bereaved mother, Olive Creary. "It wasn't a case where he was ill and nothing was done. We went to Florida like three times to see the dermatologist, he went to Cleveland, Ohio where the Vasculitis Centre is located (but we didn't know it at the time), and when he wasn't getting any better, there was just no mention of seeing any other specialists.

"I feel let down. You put all your faith and trust in the doctors who are treating you, you expect that they are going to look out for your best interests, you know?" she said.

Olive Creary mourns as hard as a typical mother. But she's by no means typical. She has turned her pain and tears into a movement to help foster awareness of the disease and, hopefully, spare other mothers the agony she and her family are going through, by establishing the Ricardo Lee Vasculitis Foundation.

"It does offer me some amount of solace.," said Creary. "I just believe that this is what he would have wanted me to do because of what he experienced and what the family experienced by not having the information that was necessary."

Ricardo, who died days after his 32nd birthday, was found to have Henoch-Schonlein Purpura (HSP), a type of vasculitis characterised by an inflammation of the blood vessels in his skin. He developed rashes on his legs, first red then black; aches in his knees and ankles if he stood for long periods, swelling and pain in his abdomen and problems with his kidneys.

HSP is one of several diseases under the umbrella of vasculitis which, broadly, refers to inflammation of the blood vessels anywhere they occur in the body. It is more common in children, who usually recover. When adults do get it, it can be fatal.

Once Ricardo was diagnosed in 2005, first with hypersensitivity vasculitis, the worried mother took her son to dermatologists and rheumatologists for help. But much of what she learnt came after the fact and mostly from her own research on the Internet and at the Vasculitis Centre in the US.

Olive Creary (2nd left), her sisters Sharon Williamson (left), Dawn Green (2nd right) and their niece Jeanel Bowla at a recent press conference on vasculitis.

"Given how the disease manifested itself by just affecting the skin, I just wondered, after all the research I'd done and after talking with the specialists at the Vasculitis Centre, whether maybe he should have been referred to a nephrologist from the onset of the disease because [the research] does state that at that stage that type of vasculitis affects the kidneys and research also says that 20 out of 100,000 persons are diagnosed with that type of disease," she said.

"It affects children, and children survive, but when an adult gets it, it can lead to fatality, which was the case with Ricardo, which, I didn't know, and he didn't know. We just didn't know, we just did not know," Creary said. Tears filled her eyes as she spoke of the mental, emotional and physical trauma her family experienced in the three years that Ricardo was ill.

She said Ricardo had been on medication (steroids) for some time but that he suffered serious side effects such as hair and eyebrow loss and extreme weakness. He became so frustrated with it, she said, that in consultation with his doctors, he stopped the steroid treatment, but appeared to have gone into remission for about a year. Unfortunately, however, the disease resurfaced with such force in 2007 that within a matter of months, Ricardo was dead.

Medical doctors agree that part of the difficulty is that Jamaica has no specialists in vasculitis. Another critical missing link is the absence of necessary testing equipment.

"Vasculitis is not a common disease and it's just difficult to diagnose and difficult to treat," dermatologist Heather Brown-Elliott told the Observer.

"We have some of the technology but one of the techniques needed - immunofluorescence microscopy - we don't have it here, and so we have skin problems that need immunofluorescence but we just don't have the facility in Jamaica. We don't have all we need to take us leaps and bounds into early diagnosis or as early a diagnosis as we would probably want to have.

"So we might be able to say that it's a vasculitis but we may not be able to say it is IgA (Immunoglobulin A Nephropathy) or it is HSP, because all of the supporting details are not in place and that is the challenge. And so even though Ricardo was diagnosed with vasculitis, what we found was that he was moving from one diagnosis to the next within the family (of the disease) because we didn't have all of the backup to determine if it was 'A', not 'B' or 'C'," she said.

There are no incidence figures for vasculitis in Jamaica, but Dr Brown-Elliott said the condition "is not terribly common in Jamaica or anywhere in the world". Studies from England, Spain and Scandinavia show figures of 20 cases per million. Vasculitis appears more common with advanced age but there are some types which affect children.

"The challenge is that this disease is in evolution. It will start in one place and end up somewhere else," said Dr E Nigel Harris of the University of the West Indies. "For example, it will start in the skin and end up being a multi-organ involvement."

For that reason, medical professionals have adopted a multi-disciplinary approach to diagnosing and treating vasculitis and urge people to get regular targeted check-ups.

"I don't know that there's any way you can avoid getting it," said Dr Harris. "There's no lifestyle involved. I hate saying so, but you're either lucky or nor."

Added ophthalmologist Dr Leon Vaughn: "It's not the kind of thing we go routinely checking for unless the person has symptoms. I would hedge against routine checking because of the time and expense involved but I would encourage people to have routine checks in order to clue us in."

But even though the Crearys hurt, Olive and her husband Horace are grateful for the "excellent" care Ricardo received while at the University Hospital of the West Indies where he was admitted in the latter stages of his illness, and they are hopeful that through the foundation they started in his honour, they will be able to help others like him.

"I must say that Ricardo got the very best medical care in the latter part of his illness while he was at the University Hospital," Mr Creary said during a recent press conference hosted by the foundation to discuss the symptoms, diagnosis and treatment of the disease.

"It's a very complex disease and while I'm hurting and am still a little puzzled, I think at the time we got the best care we could. We just don't have the specialists here in Jamaica, we really don't," Mrs Creary added.

"I actually watched my son die that morning in the ICU. I sang to him. there was nothing I could do," said the mother with fresh tears brimming. "That is why I started this foundation. I feel compelled to help people understand what we didn't know, not just the general public but the medical field as well."

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