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Blood disorders no longer a death sentence

Published: 
Saturday, March 18, 2017
Zalayhar Hassanali, wife of former president Noor Hassanali, and patron of The Society for Inherited And Severe Blood Disorders T&T Ltd, left, walks hand in hand with the society's technical adviser specialist haematologist Dr Waveney Charles at the society's annual walkathon event in the Queen's Park Savannah in 2015.

If we educate, manage effectively and efficiently diagnose and treat, you automatically have a reduction in the number of patients born with inherited blood disorders, namely haemophilia, sickle cell disease and thalassaemia.

Dr Waveney Charles:

With early detection and advances in medical treatment, it is no longer a death sentence for people diagnosed with an inherited blood disorder (IBD)—they can now live a long and relatively healthy life.

Speaking to the Sunday Guardian at her office on Luis Street, Woodbrook, last Tuesday, specialist haematologist Dr Waveney Charles said, “If we educate, manage effectively and efficiently diagnose and treat, you automatically have a reduction in the number of patients born with inherited blood disorders, namely haemophilia, sickle cell disease and thalassaemia.

“Using very sophisticated methods such as prenatal and natal diagnosis, we can give optimal treatment and get the best care for these patients.”

Charles said they have a patient who is 75 years old with sickle cell anaemia.

“It wasn’t considered normal for people with sickle cell to live to 75. It’s quite an amazing thing, when I was a medical student in the 60s we were told that patients with the disease couldn’t live after 20. It was like a death sentence.”

The society’s technical adviser said most of their patients now lived into their 60s or more and patients in the Caribbean had the best survival rates in the world.

Former Miss Jamaica Universe Shakira Martin died in 2016 due to complications with sickle cell disease. She was 30 years old.

Charles said very few toddlers now died in infancy compared to the past when many died from infection. This was since a US haematologist in 1986 determined that children born with sickle cell disease be given penicillin and T&T had followed suit.

The former director of the Blood Bank said to get the neonatal mortality rate (NMR) to enviable Scandinavian levels inherited blood disorders will have to be addressed seriously.

Charles said until recently it was felt that sickle cell disease was a disease of African origin: it is now known that Nigerians have the greatest number, followed by Ghanians, then Indians with the condition.

The part-time consultant at Ward 44 at the Port-of-Spain General Hospital, said IBDs affected primarily people of African and European origin in T&T, but “we have them all”.

 

Charles has an ‘occult

When asked if it was a personal experience of a family member whose child had a disorder that led to her to be so totally absorbed in her work, Charles replied, “Do not feel as we say in Trinidad “ahow” in asking.”

Charles, 73, attributed her passion for haematology as her “occult love for genetics” even though she was not a geneticist. But Charles knew when she started specialising in haematology exactly what she wanted to achieve.

The part-time consultant in the Ministry of Health said she had also been asked why she was so absorbed in her work with blood disorders by her medical colleagues all over the world—Thailand, India, USA to the UK—who tested her blood, which was negative for blood disorders, as well as her parents, siblings and their children.

Charles said the first lot of thalassaemia patients in the 80s requiring bone marrow transplants had to have a sibling who had to be totally compatible.

She said now there were hoploidentical (mismatched) or not totally identical operations performed from mother-to-child transplants and the results were extremely gratifying.

Charles said the medical community was now waiting with bated breath for gene therapy to be applied to treat blood disorders. She said a procedure that was available now was Preimplantation genetic diagnosis (PGD) which helps to identify genetic defects if both parents have a serious blood disorder and are likely to have a seriously sick child—they can take a healthy sperm from the man and ova from the woman devoid of abnormalities through in vitro fertilisation and implant them in a healthy embryo.

Charles has never taken a cent from any parent or patient with an inherited blood disorder from the society.

Amongst them are Trinidadian-born internationally acclaimed Dr Wayne Fredrick, president of Howard University, Dr Lou Anne Barclay, and SISBD president Issa Ali, who are literally living testament to her skill and caring.

The ever humble Guyanese-born Charles implored on several occasions that the interview contain little or no mention of her, treasuring her anonymity to walk the road and go to the market unnoticed.

She is an unsung heroine to parents whose children she had saved from certain death sometimes administering life-saving medicine to children after midnight or treating a child who developed a fever which could have been a veritable death sentence.

Charles also used her own initiative to create a tertiary healthcare system for patients returning from bone marrow transplants in Italy.

The Guardian’s Woman of the Year 1998 said she preferred instead the spotlight be thrown on the society’s upcoming international medical symposium at the Hilton Trinidad, Lady Young Road, Port-of-Spain, on March 24 to 26, where a host of international medical experts will speak about the latest treatment and care for people with blood disorders.