A DUBLIN WOMAN who suffers from a rare disease is appealing for help to pay for life-changing surgery.
Megan Forkan, known as Mags, suffers from Ehlers-Danlos Syndrome (EDS), a rare disease that attacks the connective tissue in the body.
Mags says that she spent much of her life just assuming she was the kind of person who spent a lot of time ill.
“I would click in and out of joints getting out of bed, have a bucket beside me to get sick into watching TV or couldn’t have baths or showers. But I just thought it was normal.
“It was my normal. You learn to adapt, but for the last two years, adapting hasn’t been possible.”
After spending years searching for a diagnosis, she was finally sent to see specialists in the UK, who told her that her symptoms went beyond the regular muscular-skeletal issues she had been told she had.
I was seeing specialists, but nobody pieced it all together. Since 2014, I was increasing in symptoms. I had lost weight, had palpitations, gastro issues, got very severe headaches and a number of neurological symptoms. I was referred to a hyper mobility unit in London and saw and EDS expert and he pieced this all together why this was happening.
EDS affects collagen, the main structural protein found in skin and other connective tissues and is a genetic spectrum disorder which can be hugely debilitating or mild. In Mags’ case, it means near constant pain and illness.
“I have a lot of musculoskeletal pain, multiple dislocations every day. It can be a domino effect. In my case it’s been a gradual decline and I’ve been diagnosed with other illnesses.”
One of those issues is cervical, cranial instability (CCI), a condition that leaves the neck and head unstable and makes even turning her head a risk.
“I had an upright MRI that showed instability in my neck, which is not even that common in EDS.
“Basically my neck is completely unstable as if I’ve been in a car crash. When I rotate my head to right or left I rotate so far that I cut of the blood supply through my vertebral artery to my brain.
That means everyday I risk stroke, paralysis or death from the simplest of tasks. I often temporarily lose my sight or pass out from turning my head too. I’ve already done damage to my spinal.cord To reduce the risk I’ve been in a neck collar for a while now.
“I feel like a ticking time bomb. I know there’s a potential for something bad to happen if I fall or from the slightest bang”
The surgery to fix the CCI in people with eds is only currently performed in the US, where the experts in these procedures practice. Mags will fly out there this weekend. However, the fact that it is out of the EU means that it comes at a high price. To that end, Mags’ family and friends have rallied and raised over €80,000 to help her afford the surgery.
But she still needs the public’s help.
“Nobody expects that they’ll have to fundraise. On top of being sick, having to fundraise is something nobody should have to do.
“It’s a very specialised surgery. But it has a 95% chance of improving my quality of life.
I’m going to need tests when we arrive and will need at least two, possibly three, surgeries. Hospital fees are the major thing – each admission into the hospital is around $45,000. That’s not including being 9-10 weeks over, rehab and flights.
“But we know this can rectify our situation. We’ve already spent €40,000 treatment in UK and the States. Had I not had those, I’d have no answers.”
With the travel date upon her, recently-married Mags is asking the public to chip in to help her and husband Jimmy enjoy a normal married life.
Our close family and friends have dug deep to get us to €80,000, but we need to go a bit more public. Our friends and family have done amazing things.
“I never envisaged in a million years I’d have to do this. I wouldn’t wish this on anyone. I’ve been lucky because I’ve had such a good group around me. But I am angry that myself and others with EDS are not getting what they deserve.
I just want to enjoy married life. Our life has been put on hold.
“I will have to manage my condition, but this will let me live my life.”
To donate, click here or you can transfer to a bank account: Ulster Bank Ac 15088739 Sort code 985040 Iban IE56ULSB98504015088739