01/28/2025
https://gofund.me/0e8e6a58
Hello lovely people,
As always, huge thankyous to those who have donated recently.
I wish this update was more positive but sadly, it is not. Sarah is in a critical situation with the lesions on her body. The outcome of the blood tests is a diagnosis from her Rheumatologist of a condition called Pyoderma Gangrenosum, this is an auto-immune response and linked to the Rheumatoid Arthritis. It is incredibly rare, and Sarah’s rheumatologist has dealt with less than a handful of cases in her lengthy career. It is excruciatingly painful, debilitating, and life restricting. Add this to the long list of other RA symptoms, pain, additional medical diagnoses and issues Sarah has, the situation is heartbreaking.
In terms of next steps. Recent donations have also allowed for the Rheumatologist to prescribe a medicine that has had good outcomes in terms of response of the Pyoderma Gangrenosum, moreover, the medicine should also help with the RA pain and flares. But, administering it is complex as it must be done by IV. The medicine isn’t usual so has be brought in across country and Sarah’s home nurse doesn’t feel they can administer at home due to the potential risk.
Therefore, there has been a wait for the medicine and the complication of moving Sarah to a medical facility to administer the medicine is being ironed out.
Once the medicine has been administered, it will need to be administered again in two weeks, thereafter, subject to a positive outcome to the first 2 doses, it will need to be administered every 8 weeks. This condition isn’t curable but another that we hope can be brought under some sort of control.
Costs as always are high. We must continue with a regular carer to tend to the wounds, the nurse must be able to visit regularly to check on things, this averages around 1500ZAR (£66) per week for both, there is the cost of the next doses of medicine, each dose is 3000ZAR (£135). Plus, additional costs for extra pain meds, dressings and increased doses of some of the meds she is already on.
Sarah’s ability to work and bring in income is diminished and Muvo’s responsibility to care for Sarah curtails opportunity for him to bring income in too.
This update is an appeal to raise as much as possible. It is difficult to pin a figure down as each piece of the South African medical system like to take a slice, but the urgent aim is to ensure Sarah gets continued support from the carer and nurse at home, and to get her through the next couple doses of new meds and the complexities of administering it.
Any help you can send Sarah’s way is met with endless gratitude. Please continue to support Sarah if you can. I understand Sarah medical challenges can feel insurmountable, but your gifts really do save Sarah from being overcome.
Much love and hugs people.
Cathx
Image by Peter dos Santos on Unsplash
