Standing against lymphoedema stigma with education
FOR 27 year-old Madimo Mokgosi, life and her health seems to be handing her one obstacle after the next.
After surviving a liver transplant in 2013 following her diagnosis of hepatitis autoimmune disease when she was just 18 years old, the bubbly Johannesburg teaching assistant thought she had put the worst behind her.
Back then, she had boasted about her new lease of life and was looking forward to doing the normal things young women her age did.
But two years later – she faced a new hurdle.
“In 2015, my left leg started swelling up, but would go down to normal size again. At first, my doctor thought nothing of it and thought it was probably just reaction to stress. But it grew bigger and bigger.’’ After a series of scans and tests, it was confirmed, Mokgosi had lymphoedema – a collection of lymphatic fluid that causes swelling in the arms and legs. According to the Lymphoedema Association of South Africa it occurs when there is a dysfunction in the lymphatic system. Mokgosi’s doctors found that the lymph node on her left leg had been blocked, speculating that it could have been caused by a nerve being cut during her transplant. Mokgosi’s leg has continued growing due to incurable condition, causing much scrutiny and speculation from those around her community.
“I have realised that a lot of people don’t know about this disease. I walk around in a compression sock and I have heard people comment behind my back that I have an artificial leg, or some will say, ‘Oh she’s beautiful but, ai! this leg?’” she said.
The association explained that severe cases of lymphoedema can be debilitating, and the condition is sometimes painful.
There are no specific studies about incidence, but the estimated number of people worldwide suffering with this condition is 140-250 million.
To counter the discomfort caused by her leg, Mokgosi said she had started to exercise.
“It (her leg) gets hard and heavy, but exercising helps keep it from growing, or rather, slows its growth. My new doctor said it might get worse as there is no cure for it and if the lymph node gets to my heart it could be fatal. That’s why I’m keeping active”, she said.
Mokgosi – who also has also spoken at a number of Department of Health awareness drives for hepatitis – said the one thing that kept her going was her work in educating people about these diseases.
She said: “I believe that when you are saved from near death, you are saved for a reason. And I’ve been posting on my social media accounts and have had people message me saying they too were living with the disease but were ashamed of it and would hide their affected limbs in pictures. I just want to raise awareness on self-acceptance and positivity”.
You are saved for a reason… I want to raise awareness on self-acceptance and positivity