Sehnaz needs a kidney donor
A Call for Life: 18 Years on Dialysis and Still Waiting
For over 18 years, Sehnaz has fought a battle many never see, and few understand a life tethered to a dialysis machine after both of her kidneys failed in 2007. From the trauma of diagnosis to the daily physical pain and psychological isolation of home dialysis, her story is not only one of personal courage but a pressing appeal to the public: living kidney donation saves lives.
At just 25kg, Sehnaz endures five sessions of home dialysis a week. Each session takes up to seven hours, causing her extreme cold, cramping, and persistent fatigue. Despite being on the National Kidney Transplant Register for 15 years, no match has yet been found due to high levels of antibodies in her blood the result of early blood transfusions. While initially told these antibodies would disappear over time, they have remained, making a match exceedingly rare.
Today, thanks to advancements in transplant medicine at Guy’s and St Thomas’ Hospital, there is new hope. With desensitisation treatments now able to reduce harmful antibodies, Sehnaz’s transplant team has recommended finding a living donor. “I’ve held on all these years hoping for a call. Knowing that a living donor could give me a second chance that’s a light I haven’t seen in a long time. For me a day on dialysis is what it feels like for most people waking up and working an eight-hour day, it’s literally a full-time job” says Sehnaz. “When you’re faced with life or death, you will always choose life… but that life still needs hope.”
Her story is a plea to the public: learn more about becoming a living donor, and if possible, take the step that could save a life.
It’s an easy assumption that a family member would be the primary option to help Sehnaz, whilst it is not always guaranteed that a family member will be a matching donor, things become far more difficult, when misconceptions and self-serving beliefs are dividing factor.
Only around 11% of organ donors in the UK are from Black, Asian, and minority ethnic backgrounds, despite making up around 14% of the UK population. However, 36% of patients on the kidney transplant waiting list are from minority ethnic backgrounds.
It’s an easy assumption that a family member would be the primary option to help Sehnaz, whilst it is not always guaranteed that a family member will be a matching donor, things become far more difficult, when misconceptions and self-serving beliefs are dividing factor.
Sehnaz has shared her experience of living through this ordeal without the support from her family;
‘When a person with Renal Kidney failure is faced with the difficult circumstances of antibodies, because of blood transfusions. The offer of a kidney from a deceased donor is “A needle in a haystack”. This is where a kidney from a living donor becomes the best option. I have been very reticent over the years to discuss, why members of my family have not come forward! Because I don’t want to hurt their feelings. Over the years my family’s response has been one of silence, and indifference. My experience when the subject of a living kidney donor has been discussed with person’s, the expression “It’s a big ask” comes up more than I care to mention. Unlike, heart failure, and other organ failure, that are considered life threatening. There is a general misconception, that a person with kidney failure, can carry on living a relatively healthy life on a machine (dialysis). Yes, “it is a big ask”, with the right information, it can prove to be the most enhancing altruistic life-giving gesture from a living donor.
I encourage you to make direct contact with Anita Copley, at Guys Hospital Email: anita.copley@gstt.nhs.uk
Key Statistics on Living Kidney Donation
- Ethnic minorities are disproportionately affected by kidney disease.
- People from Black, Asian, and Minority Ethnic (BAME) backgrounds are 3 to 5 times more likely to develop chronic kidney disease compared to white people.
- Patients from minority ethnic backgrounds wait longer for kidney transplants.
- On average, Black and Asian patients wait 6–12 months longer than white patients for a kidney transplant.
- The increased wait is due to a shortage of ethnically matched donors and more complex tissue types.
- A closer ethnic match increases the chances of transplant success, reduces the risk of rejection, and is especially important for patients who are highly sensitised (i.e., have high antibody levels, like Sehnaz).
