Woman suffering rare condition raises funds for treatment she cannot get through NHS

A woman from Wolverhampton diagnosed with a rare and life-threatening condition is raising funds for treatment she cannot get through the NHS.

Rebecca Cresswell from Wolverhampton
Rebecca Cresswell from Wolverhampton

Rebecca Cresswell, 42, from Aldersley, was diagnosed with adrenal insufficiency at birth and has an even rarer form of the disorder, Congenital Adrenal Hyperplasia, which causes crippling fatigue and hypertension.

Becky cannot make the stress hormone cortisol, and as a result is constantly unwell and at risk of adrenal crisis if shocked or poorly.

She spends a lot of time feeling she has no ‘get up and go’, has had many hospital admissions and now has offshoot medical issues.

Her stomach can no longer absorb her oral tablets and she has severe gastric issues due to having to take tablets for her condition for so long.

She now faces the possibility of invasive surgery to alleviate stomach issues which could be avoided by using an adrenal pump.

Becky had a trial of treatment called Continuous Hydrocortisone Infusion Therapy. This involved seeing a private endocrinologist and using an adrenal pump to see if the treatment improves the quality of life – and it was a success.

Her current pump is on loan and Becky will have to buy her own or she will have to go back to taking tablet medication.

The adrenal pump is currently unavailable to Becky on the NHS but is a successfully proven treatment to ensure cortisol is delivered into the body at the optimal times.

She said: "One of the reasons I am speaking out about this is I want to create awareness, as it isn't just me who is struggling with this condition.

"It is a subject I have been researching for the last five years to improve my own quality of life.

"But within that research, I have become a part of groups who are trying to get the pump treatment.

"A lot of patients are struggling with symptoms from long-term oral steroids, which you take because of the condition.

"There is no funding pot available to patients like myself to be able to access this treatment."

"In my case, there seems to be a lot of side effects with the oral steroids which need to be addressed, and this other method really improves your life," She said.

"With this particular treatment, it is a bit of a lottery.

"It is going to be a lot of money per month for me to keep up with it, especially with inflation, so if I don't gain funding it will be difficult for me to maintain."

Becky's condition will never be cured or go away, but her life could be drastically improved by having a pump.

The pump can significantly help improve fatigue and exhaustion as well as help keep Becky out of the hospital and prevent gastric surgery. The pump provides a more stable and better-managed condition.

Becky has already saved money and paid for appointments and blood tests for her pump trial privately.

She is now needing the final £,2999 to purchase her own pump, and £500 for medication and tests for the next six months.

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