Ensuring Autoimmune Disorders are recognised by Kenyan Government
As a patient suffering from Scleroderma – an autoimmune disease, I have had a difficult time from my initial diagnosis up to getting the correct treatment for my condition.
As a rare disease, there is little to no information about this condition; symptoms, treatments, diet restrictions, therapies and such.
My doctors in Kenya couldn’t quite put a finger on what was wrong with me when presented with the initial symptoms – swelling on my hands, fingers turning blue (known as Raynaud’s Syndrome which is the first symptom of Scleroderma). A rheumatoid specialist misdiagnosed me with Lupus. Unsatisfied, my parents opted to get a second opinion in India where I was correctly diagnosed with Scleroderma. At this stage, I had had the symptoms for about 3 years.
The shortage of proper specialists to correctly diagnose and manage autoimmune disorders is causing many patients to seek alternate medication, which worsens their already aggravated symptoms. Most patients in Kenya are directed to a rheumatologist because inflamed joints are considered an arthritic problem. Some patients are even accused of feigning pain just because doctors don’t get the correct tests done. There are only 5 doctors in Kenya who can manage autoimmune disorders, which is a huge disadvantage for citizens.
Accessing quality health care is a huge challenge due to lack of specialists. Many cases that occur in rural areas have no hope of finding out what they may be ailing from. Acquiring affordable supplements is also another burden to patients suffering from autoimmune disorders. Stigma is also a crucial hindrance to acquiring proper health care as some patients are embarrassed by their physical appearance. This not only affects us mentally but also affects our productivity. Many patients suffer from inclusivity as they lag behind during job interviews.
The Connective Tissue Disorder Association (CTDA) which I am a member of, decided to present a petition to the Senate of Kenya on the challenges facing individuals with autoimmune disease/connective tissue disorders.
Headed by Senator Isaac Mwaura, our petition was initially tabled at the Senate floor where all members heard our challenges. A step further was taken when the Senate Health Committee decided to meet CTDA and give us an opportunity to present our petition. This was also a chance for them to witness our dilemma, hear our personal accounts and further plan on implementing our petition. The senators patiently heard our petition and gave us positive feedback on how the government will work on delivering the petition. As noted by the senators, lack of awareness was the major cause of all the challenges being faced by patients.
A massive public sensitisation campaign would be the perfect starting point in raising awareness on autoimmune disorders. This will go a long way in ensuring patients don’t feel neglected; that they have a right to live their lives, that it’s not the end and proper care will help them live better lives.
Author – Farah KhaleckRead more Read less