Dad’s new hope in rare disease battle

PUBLISHED: 14:34 17 January 2013 | UPDATED: 14:34 17 January 2013

Joe Brown who has a rare condition which effects his kidneys.  Pictured with his wife Hollie and two sons Rickie and Freddie.  Picture: James Bass

Joe Brown who has a rare condition which effects his kidneys. Pictured with his wife Hollie and two sons Rickie and Freddie. Picture: James Bass

(C) Archant Norfolk 2013

Joe Brown was preparing for a wonderful Christmas with his family as he was in line to receive the gift of a life-giving kidney.

But the dad of two’s hopes were dashed just before the holidays after doctors called the operation off and he is now back on the transplant list and undergoing lengthy dialysis sessions.

Despite the disappointment, the 29-year-old from Lingwood is facing the new year with optimism as he prepares for a fresh chapter in his lifelong struggle with the rare condition that has caused both his kidneys to shut down, and seen him endure two transplants.

Contractors are now converting his spare room into a dialysis unit, which should be ready by the end of February, so he can treat himself and save him having to travel to the Norfolk and Norwich Hospital three times a week. He said: “It’s a real pain. It’s the whole morning and you’re just sitting on a bed. I’d much rather be at home hanging out with my two little boys and wife.”

Mr Brown suffers from Henoch–Schönlein purpura, an autoimmune disease that causes the body to attack itself. It first struck at the age of 10 when rashes appeared all over his body and he suffered stomach cramps. He was in hospital for a week and doctors warned the condition could strike again and affect his kidneys.

Their prediction was right. Five years later his kidneys “gave up the ghost” and at 16 he underwent his first transplant with an organ donated by his mum. It lasted two-and-a-half years before his body rejected it and he was put onto dialysis and the transplant list. He had his second transplant in 2006 but in March last year his body again rejected the organ and he returned to dialysis.

His sister-in-law’s boyfriend then offered Mr Brown one of his kidneys, which was a match, but just two weeks before Christmas one of the final tests came back with bad results and the operation was called off.

Mr Brown said: “I know things are complicated; it’s just the cards I have been dealt with. It would have been great to have another transplant –dialysis is a pain but it’s not the worst thing in the world.

“Plenty of people are worse off than me; I can still work, go out and play with my children.”

He is now back on the transplant list but looking forward to the “freedom” and independence home dialysis will give him while he waits for a fifth kidney.

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