Scleroderma
By Lydia Ngwakwe
Lagos, Dec. 20, 2018 (NAN) A 29 year-old Scleroderma patient, Miss Sarah Jatto, on Thursday in Lagos, recounted her harrowing experiences when she was first diagnosed with a strange ailment, scleroderma, in the United Kingdom.
Jatto, a British-born Nigerian based in the UK, told the News Agency of Nigeria (NAN) that until she was diagnosed at the age of 21, she had never heard about the terrible health condition.
“The most devastating part of being diagnosed with scleroderma was when doctors told me they would be learning about the disease alongside me,’’ she said.
According to her, the pains and ordeal of having scleroderma have motivated me to advocate awareness and medical attention for people living with the condition in Nigeria, as many people have never heard about it.
Jatto is also the founder of “Me and Sclero Foundation’’ created to grant financial and moral support to people living with scleroderma.
Scleroderma, also called systemic sclerosis, is a chronic, degenerative disease that affects the joints, skin and internal organs; it is also associated with blood vessel abnormalities.
According to the WebMD, the condition causes the body to make too much of the protein collagen, an important part of skin.
“As a result, the skin gets thick; tight and scars can form on the lungs and kidneys; the blood vessels can thicken and not work the way they should, leading to tissue damage and high blood pressure.
“The exact causes of scleroderma are still not known and the disease is not contagious, infectious, cancerous or malignant, WebMD said.
Jatto said: “Until the age of 16, I was a normal, healthy and vibrant teenager.
“I noticed some patches and irritation on my skin and consulted a medical expert; they told me it was skin reaction and prescribed some ointment and medication.
“When the situation was not getting better, I went back and had to be subjected to various test; that was when they noticed some abnormalities and referred me to specialists.
“By then, I had started presenting symptoms of feeling cold; cold could mean anything; light winds, air conditioning, a cold room, cold drinks or ice cream.
“I also felt numbness in my fingers, with my fingers and toes started lacking blood flow to the tips, and I eventually developed painful digital ulcers.
“There were also larger patches on the skin, stiffness of the fingers and joints alongside others; shortly afterwards, my facial and physical features started changing.’’
Jatto told NAN that a few years later, she was eventually told that she had a condition called scleroderma.
According to her, as at the time of my diagnosis, doctors did not know much about the condition because they had not come in contact with many people with it.
“A time came when I felt enough was enough and it was time to ‘shake it off!’ but I had to be strong and put my whole life back into perspective.
“I changed my thinking and started to dwell on how I could improve my lifestyle and future as well as embark on a journey of survival and reaching out.
“Through it all, with support from family and friends as well as good medical attention and counselling, I survived.
“I wish people living with scleroderma in Nigeria can receive the kind of incredible healthcare support that I have received in the UK,’’ she told NAN.
Jatto said that some of the challenges associated with living with scleroderma include discrimination, stigmatisation, lack of counselling and support system.
She said: “I will love the government to support scleroderma patients living in Nigeria; from what I have learnt from other scleroderma patients, medication and testing are very expensive.
“The medication varies from N5, 000 to N8, 000 depending on where you are getting the treatment from.
“This is the cheapest; so, a patient can end up spending about N40, 000 per month to get treatment.
“For someone who has scleroderma, you have to get regular tests and regular medication so that you can at least live a decent and functional life.
“So, I want the government to, if not give free healthcare, subsidise the medications that these patients are receiving,’’ Jatto pleaded.
She also called on the government to ensure that health facilities were fully equipped with adequate manpower for improved diagnosis and treatment of patients in the country.
“From my investigations, patients are told to go somewhere else for testing and sometimes when they come back with results, the results are not okay for the doctors.
“Consequently, they have to go back for retest and this is stressful; also, their blood tests are sent to India for diagnoses and they have to pay heavily for it.
“So, if there is a state-of-the-art equipment under one facility, it will be much easier for patients in Nigeria; patients who have diabetes, HIV/AIDS, cancer, scleroderma or other health issues,’’ Jatto said.
She, however, called on stakeholders in the health sector to partner her foundation, “Me and Sclero’’ to create awareness on the rare condition.
According to her, there is no single organisation for scleroderma like there is abroad, and my foundation is created to bridge that gap.
“In May 2015, I opened social media accounts, @meandsclero, on Twitter, Facebook and Instagram; in the summer of 2015 I challenged myself to write a book ‘Me & Sclero’ based on my experiences with battling scleroderma.
“ My aim is to ‘raise awareness and educate the world about ‘Scleroderma’ and I do this through documenting my journey; both the good and the bad.
“Me and Sclero Foundation was launched in 2018 and has 13 active members,’’ she said. (NAN).
LED/VIV/GOK
Edited by Olagoke Olatoye