Personal message

Ever heard of VEXAS syndrome? The Adcocks didn’t until last year and the rest of the world hadn’t until 2020. It’s a debilitating inflammatory disease of which little is known and treatments are very limited at the moment. It attacks many parts of the body sometimes singularly or sometimes a whole load of things at once. Nigel has had attacks in his eyes, ears, all joints from knees to elbows to ribs, painful blood clots, tiredness that you cannot believe and numerous bouts of pleurisy and pneumonia. All of this and not to mention the side effects of cortisone as well as effects of Myelodysplastic syndrome which is also associated with the disease. In the last year Nigel has been in hospital over a dozen times with him having 7 stays since the end of July 2023. Medical bills are killing the family and at this stage medical insurance is declining the medication that Nigel requires to control the disease. The cost of the medication, over and above the monthly medical insurance fee and other medications, is over R30.000 per month. Nigel has not been able to work since July 2023 and the family are not sure if he’ll ever be able to work again.  Below is a history of Nigel’s story.  In May of 2018 Nigel became ill. After a year of tests and not knowing what was wrong he was diagnosed with 2 autoimmune diseases being systemic vasculitis with relapsing Polycondritis. During this time he was also retrenched and he started doing his own handy man work and servicing of cars. His wife runs her own business which is seasonal.  From May 2019 to May 2022 Nigel had numerous flare ups and hospital visits. He was on tons on medications to try and control the disease but nothing worked.  Last year May, he was diagnosed with squamous cell carcinomas on his head (6 to date) for which he currently needs radiation treatment and since then the battle got worse. He has also been diagnosed with Myelodysplastic syndrome which is a pre leukaemia blood condition. So all of this bought on the need to test for VEXAS syndrome  of which his doc is 100% certain he has. Genetic testing has been sent to USA and results should be through this week and Nigel will be the only known case in South Africa so it is very rare. Long term cortisone use has resulted in a whole load of other conditions of which cataracts is one. These can only be corrected in May 2024 provided he doesn’t have another flare up in his eyes. The loss of sight is really getting Nigel down with his sight deteriorating quickly. It is also preventing him from doing any sort of work.  Medical bills alone this year amount to close on R1.300.000. This excludes his latest 3 week hospital stay. Medical Aid have only paid a portion of these bills.  His only option for treatment is a medication which the medical aid is refusing to cover. The cost of this one medication is in the region of R25.000 per month. The two other options are a bone marrow transplant or stem cell treatment which Nigel is not a candidate for either as he is too weak and too susceptible to infections. The family are looking for donations please to assist in paying past and future medical bills. His wife is the only income earner at the moment and is working ridiculous hours to try and keep the family afloat but with high medical bills and cost of living, this is proving very difficult. Those that know Nigel know that he only has a fraction of the strength and vuma he used to have. He was a man that couldn’t sit still and can now barely walk a few steps without feeling exhausted. Nige was always everyone’s “go to” man. He also does a lot of community work in the a Pilanesberg National Park, which is his retreat, but his illness is limiting this too.   Please help us in trying to make him feel better. 

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