A young woman who can collapse just from smelling an orange says a rare condition has left her feeling like she’s 90.
Stacey Parker, 31, can become violently sick or swell up and become covered in hives as simply eating or smelling food triggers severe allergy-like reactions.
She was in perfectly good health three years ago but then began suffering from the rare Mast Cell Activation Syndrome, which has left her housebound.
Stacey told the Manchester Evening News she was forced to give up her job as an IT trainer at Rochdale Council, sell her house and move back in with her parents.
She says her health has deteriorated so badly that she would rather be dead “than live like this for any more time”.
Mast Cell Activation Syndrome means that hyperactive cells release substances like histamine when they shouldn’t.
Stacey suffers severe allergy-like reactions when she comes into contact with certain foods or ordinary household items, or smells things such as bleach or certain perfumes.
She feels like a “guinea pig”, taking more than 30 different medications every day, and is under the care of four consultants after travelling across the country to see specialists.
She said: “Before it started I was probably the healthiest I’d ever been. I’d lost a lot of weight, I was happy, I had a job, I had home, I was dating. I was just an average young woman enjoying life.”
Stacey’s health problems started in December 2015 when her ear inexplicably became inflamed, and her lips and tongue swelled up when she took antibiotics.
A few months later, the problem came back and her reaction was just as bad when she was prescribed a different antibiotic.
Her body was left swollen and covered in hives when she was given an anti-inflammatory drug for arthritis in her feet.
Stacey’s condition has affected her mobility and energy levels, and she struggles to walk even short distances due to exhaustion.
She has told how she is almost completely housebound with symptoms including chronic pain, migraines, digestive issues, reduced mobility, dizziness, breathlessness, extreme fatigue and insomnia.
She said: “I could eat a tomato today and be fine, I could eat one tomorrow and have a reaction to it.
“It’s difficult to manage. In my own environment, I’m okay.
“My nephew ate an orange next to me and all of a sudden I just felt an overwhelming need to be sick. You can never predict it and that’s the frustration.
“Before I was on the medication for it, when I was more mobile, a bit of pollen fell onto my sleeve and I got hives from it, even through my sleeve.”
Stacey was diagnosed with postural orthostatic tachycardia syndrome (POTS) – something as simple as standing up can make her heart rate soar to dangerously high levels.
She also has two spinal conditions – atlantoaxial instability and atlantoaxial subluxations.
Stacey is desperate to find out why her health has deteriorated so badly, and hopes she will be able to recover and get back to a normal life.
She said: “I don’t want to live like this for another three or five years, I’d rather be dead than live like this for any more time.
“I know it’s a strong thing to say, but when you’ve come from being an average person to being so unwell, not having the friends, not being able to do what you want to do, it’s a hard thing to adjust to. I struggle to accept it.”
Stacey’s family have been fundraising to pay for more investigations, and they believe she may have a rare syndrome called Ehlers Danlos, which weakens the connective tissue in the body.
They have raised more than £6,600 so far.
Her family are trying to raise enough cash to pay for genetic tests for Ehlers Danlos and other autoinflammatory diseases not available on the NHS.
Stacey said: “I don’t want people to think these tests are the end of it. They won’t make me 100 per cent better, I just hope they lead me to answers that open some treatment pathways.
“One thing I find heartbreaking is I used to be able to do everything with my four-year-old nephew. Before I worked for the council I worked with children for many years.
“It frustrates me because I’d like to take him to the park and kick around a ball with him. He doesn’t recognise old photos of me because he doesn’t remember me like that.
“I’m 31 but I feel like I’m 90. I don’t have the purpose in life. I’ve gone from being so well to so ill.
“When it first started, I was able to walk around and now even the shortest amounts of time stood up I’m in so much pain I can’t do it. I can’t even stand to wash up. Pain relief doesn’t work, and we’ve tried all sorts.”
She is hopeful that something can be done to help her.
She added: “I’ve lost everything from it. My job, my purpose in life, a lot of friends, my home. To go from having all that to living the life I am, you wouldn’t believe that would happen in such a short space of time.
“I’ve gone from having this normal life to being stuck in four walls. I can’t go out without help. I only have one former colleague and friend who comes to see me, because she feels confident to take my wheelchair.
“A lot of people won’t understand, but I think if you were born with something wrong, you don’t know any different.
“It’s just feeling like I’ve lost myself, and I’m grieving for myself, and not being able to accept who I am now.
“But if I accept who I am now, will I lose the hope and the determination to try to get some improvement? Because I don’t want to do that.
“Who would want to stay inside four walls and live like this when all their friends are going out enjoying themselves? I don’t want to be alone forever.
“Will I ever have my own children? Will I ever get married? To have that taken away from you because potentially someone hasn’t helped you, is really hard.
“I don’t think anyone can fully understand it unless they have gone through it.”
For more information visit the JustGiving page and the Help for Stacey Facebook page.