Three years of agony
‘‘Imagine being bitten head-to-toe by mosquitos, but permanently – wanting to rip yourself apart.’’
This is the reality for one Palmerston North woman who has a debilitating disease that leaves her scratching her skin raw.
Donna Cliff has been battling mast cell disease for three years. She’s been taking steroid medication so long she’s developed steroid induced type-2 diabetes, her liver is damaged and her skin is so thin she has scars from scratching it.
‘‘My bed will constantly have blood in it from just ripping [skin] all night.’’
Five years ago, Cliff was diagnosed with breast cancer, had a mastectomy and radiation therapy and thought her life would go back to normal.
But two years later, her life changed completely. She woke up one morning thinking she’d been bitten by mosquitos.
‘‘I didn’t take much notice and put some creams on the spots.’’
When they didn’t disappear she decided to take antihistamines. But Cliff ended up having an anaphylactic shock and she hasn’t had a full night’s sleep since. ‘‘It started like hives. Every time we’ve tried a different antihistamine I’ve ended up in hospital.’’
That was the start of the mast cell disease, Cliff said.
‘‘It just flares up for absolutely anything. It has been absolutely debilitating.’’
Sometimes Cliff goes to bed with ice-packs to relieve the irritation as the steroids don’t completely subdue the rash.
When her doctor suggested trialling another drug, she gave it a go and it worked.
After one dose the itching stopped and Cliff hoped she could slowly reverse other problems, such as her thin skin, once she stopped taking steroid medication.
But the drug, omalizumab, costs $1400 an injection and she needs one each month.
‘‘I’m finally getting my life back, but I can’t afford it.’’
If Cliff, a real estate agent by trade, was to use the drug at its current cost for the next 20 years, she would be spending $336,000 on the medicine – enough to buy a house.
A Givealittle page has been set up and she’s thinking of other ways she can pay for the medication.
‘‘I’ll do sausage sizzles. I’ll do everything I can.’’
Cliff’s 14-year-old son, Lleyton, painted a picture that he’s selling to help raise money.
The suffering hasn’t just affected her, but it’s taken its toll on her family, she said. ‘‘They’ve had so much stress.’’ Cliff and another family member were seeing a councillor because of the stress it caused, she said.
‘‘I’m trying to put on the big brave face because I might be suffering, but I don’t like seeing my family suffering.’’
Anglican, Catholic and Community Social Service manager Graeme Munford said for a family going through so much stress communication was important. ‘‘It’s really just giving people the opportunity to feel they can talk if they want to. Any support people have, it’s got to be at their pace.’’
Palmerston North doctor David Ayling said he hadn’t seen any patients with the uncommon disease. Mast cell disease was only given a name in 2007, making it relatively new, Ayling said.
It was estimated to be affecting one in 20 people, but the research was still new and it could affect people at a different levels, he said.
A Midcentral District Health Board spokeswoman said mast cell disease was a collection of disorders caused in part by an increase in mast cell numbers and sensitivity. ‘‘Mast cells are part of the body’s immune response system and release histamine, a powerful inflammatory agent, a cog in the wheel of acute allergic reactions such as anaphylaxis.’’
Omalizumab was funded in certain circumstances and there were one or two patients using it through Midcentral, she said.
‘‘I’m finally getting my life back but I can’t afford it.’’
Donna Cliff