Lately, André Marcel Harris, 30 has been participating in Town Hall meetings for men folk with SCD.
‘It has been refreshing to note that people are genuinely interested in the unique challenges that impact men with SCD,’ comments Andre.
André was found with sickle cell anaemia in utero, a diagnosis which prompted his parents to discover their own statuses as carriers of the gene.
‘My dad always knew he was a carrier, but mom did not,’ says André. ‘I doubt if my dad knew the implications of his status for his offspring.’
André has had his fair share of troublesome sickle cell events, including 16 years of monthly blood exchange, misdiagnosis of acute chest pain as pneumonia and what not. He has been hospitalized more than 250 times and received blood transfusion 200 times as a direct result of having sickle cell anaemia.
In the run-up to his 21st birthday, he was in hospital and not expected to return home alive.
‘I was placed on induced coma and my parents told to expect the worst.’
André did recover, however, and he went back home the very day he turned 21 – quite a homecoming for his dispirited friends and relations.
Misconceptions and Stigmatization
In July 2019, while hospitalized in South Florida, a nurse asked André how long he had had sickle cell, a query that would have been funny if it had not been so sad.
‘The query was a shock,’ André says, ‘it demonstrates the stark ignorance of some medical personnel in relation to a disease known to be the most commonly-inherited in the world.’
While he was growing up, many of his classmates kept away from André, having been told that SCD was contagious.
As an adult, André was accused of contracting SCD as a result of participating in unsafe sexual behaviours. He has also been regarded as a drug seeker and malingerer – a common experience with folks with SCD whose pain levels required high doses of opiates to bring under control.
André was among a panel of judges that, under the aegis of Sickle Cell 101, selected Cameroonian Arrey-Echi Agbor-Ndakaw International Sickle Cell Activist of the Year (ISCAY, 2019).
A certified Community Health Worker and SCD/Hemoglobinopathy Counsellor/Educator, André’s activism spans work with the SCDAA, the Cincinnati Sickle Cell Centre and others.
Still single, André thinks genotype should be an issue whenever singles with SCD planned to get married. Personally, André would rather not bring a child to suffer the disease he still grapples with on a daily basis. The same reason he frowns on marriages between carriers of the sickle cell gene.
‘It’s unfair to deliberately bring SCD upon a child.’
Through all the uncertainties of SCD, a strong faith has kept André Marcel Harris going.
‘I trust and believe God to work on my behalf, and for 30 years He’s done just that. I trust Him with the rest of my life.’
The child was having a stroke in a country with no knowledge of SCD; the parents had to rush her several hours by road to another country for treatment!