Ruth Tladi is visibly breathless when she approaches us at our table in the McDonald’s at the Diepsloot Mall in Soweto. Although 24 years of age, the short walk from their home to the mall clearly exhausted her. Cousin Abraham follows closely, wiping perspiration from his brow.
In between large gulps of ice cold Coke, Ruth makes a simple statement. “I have MS”. Trying to fill the silent gap that follows we start questioning her about where, when and how. Ivan Stander (vice chairman of the MSSA Inland Branch) and I have 40 years of MS living experience between us, we don’t know it all, but we are comfortable speaking about it all.
In 2009 Ruth had an incidence of optic neuritis (both eyes) and numbness on the left hand side of her body. She spent 4 months in hospital enduring test after test before she was diagnosed with Scleroderma and Multiple Sclerosis. (See definitions below.)
The past six years have been challenging. Besides the shattering new of her diagnosis, during this time she lost both her parents and nursed her brother on his cancer death bed. There was little, or no time to digest her own predicament.
The Sesotho girl was given minimal information about both conditions and as there was little support from her family she resorted to making use of whatever was available and affordable to her to empower herself.
Meanwhile, the scleroderma took its toll and she could not bear looking at her crusty, purple skin. She felt very lonely and isolated when was pointed at or randomly stopped and questioned about her appearance. As both conditions have similar symptoms, she gave up wondering which one was to blame for the fatigue, the muscle spasms or the sleep deprivation. At least the scleroderma was visible and could be explained, but the MS symptoms were misinterpreted as laziness and insecurity, something a local GP could surely put an end to? “My relatives expected me to carry on as they knew me, as normal …” Ruth comments sadly. Her family living in the small town of Bethlehem, Eastern Free State do not understand why the young girl cannot take up her household chores as usual.
Help and support eventually came in the form of her cousin Abraham (now 37) who learnt about her conditions and accompanied her to doctor’s appointments and the many hospital regimens. He shakes his head a lot as Ruth speaks and looks sad at times. “She doesn’t sleep” and “… they (the family) just don’t understand” he emphasises throughout. Abraham doesn’t have a permanent job, he prefers ‘piece jobs’ so that he can be available at all times to help care for his cousin, getting her up from a chair when her leg muscles painfully spasm, helping her to sit down when again, the muscles spasm.
The research done by the two cousins have borne fruit and they both have a good knowledge of MS. “I show the family, it’s all here!” Abraham quips and thrusts his mobile phone upwards showing a MS website on the screen. Their mobile phones are their only source available for research and money for air time is carefully budgeted for. But, they insist to empower themselves so that sessions with the neurologist and rheumatologist are informative for all parties concerned. Ruth’s appearance has improved hundred fold after they found the correct treatment for her. “I am so much better now and can look at myself again”, she points to her face and arms where the scars have all but faded.
Sometimes MS does overlap with other autoimmune conditions, but seldom with scleroderma. As the skin condition is more under control, Ruth is presently considering interferon beta-1b for multiple sclerosis, a disease modifying therapy which slows down progression. Although the medication is available at some state hospitals in Gauteng (Ruth cannot afford medical aid), she fears the injection part and had many questions for Ivan who has been on this treatment since 1994. Not looking convinced at all about the benefits of the therapy, she remained positive – “I don’t like giving up on myself!”
In order to supplement income, Ruth works as a cook at a take away from 09:00 till 21:00. The walk to work takes her 25 minutes each way. Taxi rides are not an option as her movement is slow and irritates taxi drivers and passengers alike. Walking prevents stressful confrontation.
Mornings at work are bearable, but as the day wears on, symptoms set in and she prefers to remain standing for fear of not being able to get up from her chair when customers approach the eatery. Most nights she contacts Abraham to fetch her from work: she literally needs his shoulders to lean on as they walk back home.
Ruth mentions that she has made a fact sheet explaining MS which she sends to friends on their mobile phones to give them some insight of the symptoms of her illness. “I do this immediately when I meet someone that I think will become a good friend” she muses. Abraham dryly suggests adding mood swings to the symptom list. Although Ruth has a tough life coping with two illnesses for which there is no cure, she faces her challenges head on and the 24 year old has become a wise old soul.
When we drop the cousins at their home in Diepsloot, Ivan and I are quiet. Our own attempts at living with this one illness seemed to fade in comparison with what we have just witnessed.
What is scleroderma:
Nearly everyone who has scleroderma experiences a hardening and tightening of patches of skin. These patches may be shaped like ovals or straight lines. The number, location and size of the patches vary by type of scleroderma. Skin can appear shiny because it’s so tight, and movement of the affected area may be restricted.
Scleroderma (skleer-oh-DUR-muh) is a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.
In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin — such as blood vessels, internal organs and the digestive tract. Signs and symptoms vary, depending on which structures are affected.
Scleroderma affects women more often than men and most commonly occurs between the ages of 30 and 50. While there is no cure for scleroderma, a variety of treatments can ease symptoms and improve quality of life.
Definition:Scleroderma is a progressive disorder characterized by thickening and tightening of the skin — especially on the arms, face and hands — which results in loss of flexibility.
Multiple Sclerosis and Scleroderma
Lisa W: Diffuse Scleroderma, CREST and Multiple Sclerosis I was recently diagnosed with multiple sclerosis (MS). That also took over a year to diagnose. My doctors tell me that I am one out of millions with this case of bad luck…
Author: Madelein du Toit and Ivan Stander