Accrington woman tells of battle with rare disease (From Lancashire Telegraph)

Accrington woman tells of battle with rare disease

5:17pm Thursday 21st April 2011 in Hyndburn By Neil Docking, Reporter

A MUM-of-three with a rare genetic disease that left her on crutches for three years has won a silver medal in a paralympic-style contest.

Sandra Kenworthy, 41, only discovered she had Von Hippel–Lindau (VHL) disease in 1996, while seven months pregnant with her third daughter.

The condition causes hemangioblastomas, types of tumours or cysts, to grow in the brain, spinal cord, kidney and eye retina. VHL can cause blindness, and can also lead to strokes, heart attacks, and cardiovascular disease.

In 2008 Sandra experienced weakness in her legs, and had surgery on a lesion on her spine.

She has used crutches since, but last year needed to undergo surgery again.

She spent two months recovering in bed at Hope Hospital, Manchester and another four in rehabilitation at Southport's Spinal Injuries Unit.

Unable to walk at all, the mum learned how to use a wheelchair, stand with parallel bars, walk with a frame and eventually get back on crutches.

When her physiotherapy ended, Sandra was invited by Julie Jones, the unit's head of occupational therapy, to take part in a special event.

Around 100 people competed in the spinal unit games at Stoke Mandeville Hospital, Aylesbury.

Sandra tried rifle shooting for the first time, and enjoyed it so much she now hopes to join a local club.

She said: “I was gobsmacked. I had a trial and passed, so I was entered into the competition.

“I loved it, and even more so for winning a silver medal.

“It has opened my eyes to what I can do.”

Sandra, of Abbeydale Way, Accrington, told how she discovered she had the disease: “There was no history of the condition in my family.

“I found a lump on my right side.

“They said it was just a cyst, but the gynaecologist wanted a deeper scan.

“That's when they found my left adrenal gland was too big and holding too much adrenaline.”

The then 27-year-old was told she needed an urgent operation because giving birth could kill her.

She said: “The surgeon said 'you're safer on the operating table than you are going up a flight of stairs'.

“I was the 47th person in the world to have the operation. Some of the mothers died, some of the babies died, sometimes both. But I was very lucky.”

Out of Sandra's daughters, Danielle, 19, Bethany, 17, and Amy, 14, only Bethany has inherited the disease.

It hasn't affected her health yet, but the pair have regular check-ups and scans and visit a consultant together.