Sick woman's mum hopes to raise £5,500 for private tests to find answers for daughter's illnesses

A sick woman’s mother is desperately trying to raise £5,500 for private testing to find answers for her daughter’s undiagnosed medical conditions.

Bernadette Parker, of Rochdale, is aiming to raise £5,500 for a private MRI scan and genetic tests for her daughter, Stacey, 30, who suffers from a little-understood condition called Mast Cell Activation Syndrome (MCAS).

MCAS sufferers’ immune systems become hyper sensitive and they react to all sort of normal things, often with a very limited diet and unable to go out much as they are sensitive to environmental triggers.

Until April 2016, Stacey was well and working, ran her own home and had a good job. Following a suspected ear infection and prescription antibiotics, her lips and tongue swelled up.

After a B12 injection and large doses of antihistamines and steroids, she began to react to all kinds of things, also experiencing an anaphylaxis-like episode, admitting her to hospital before spending weeks taking steroids and antihistamines to try and control her symptoms.

Since then, Stacey has had reactions to the scent of oranges, bleach and perfume amongst other items, triggering all sorts of symptoms, such as flushing, itching, swelling, mouth ulcers, extreme fatigue, joint pains and breathlessness.

Stacey found a private doctor that could join all the dots for her peculiar symptoms and was diagnosed with Mast Cell Activation Syndrome.

 

 

However, as her symptoms have not improved, Stacey, who takes a cocktail of medications every day to keep her alive, has since moved back in with her parents, who are looking after her.

Stacey said: “In the last three years I’ve gone from having a good career, my own home, a partner and being independent to being medically retired, living back at home with my parents and losing independence. My mobility is very poor too.

“If I went through the NHS, it would take months for the results. Privately, it is only a four or five week wait.

“After suffering for so long and being in so much pain, I would do anything for help.”

Mum Bernadette added: “Stacey’s symptoms affect her daily. Some of her symptoms include migraines, retinal migraines, severe whole body joint pains, reflux, gastro issues, allergic reactions, whole body swelling and restricted mobility. She has intracranial pressure and her heart regularly pauses too.

“It has previously been suggested by a top professor in rheumatology that Stacey has an autoinflammatory condition as the only treatment that is significantly helpful is high dose steroids which she cannot be on long term due to their side effects.”

The family are hoping to raise enough to cover the costs of private testing in London, in the hopes of finding answers to Stacey’s medical issues.

Stacey, who regularly relies on a wheelchair, is also currently awaiting tests for Postural orthostatic tachycardia syndrome (PoTS), an abnormal increase in heart rate that occurs after sitting up or standing.

It typically causes dizziness, fainting and other symptoms.

As Stacey also has several problems with her spine – including lumbar lordosis, bone spurs, intravertebral disk herniation and joint hypertrophy – she hopes to undergo an upright MRI scan, which would be less painful than a traditional lie-down one.

She added: “I’m in more pain when weight bearing, and they are clearer for spinal issues.”

Bernadette continued: “We know Stacey has issues with her spine which have been picked up on a ‘traditional’ MRI, but we aren't certain this gives the full picture given the amount of pain Stacey is in all the time and the fact pain relief isn't sufficient.”

“As an ordinary working-class family, we cannot afford to go private again without fundraising and we haven't taken this lightly,” she added.

“We know it’s a lot to ask of people but if it was your daughter, sister, niece, cousin, granddaughter, auntie or friend we are sure you'd want to do the same to give your loved one a chance to get the help, support and treatment to a better, happier future.

“From the bottom of our hearts, we truly appreciate any donations, no matter how big or small.”

To donate, visit:

• www.justgiving.com/crowdfunding/helpforstacey