Firhouse woman appeals to the public for help with medical expenses
By Aideen O'Flaherty
A 33-YEAR-OLD woman who suffers from a rare genetic connective tissue disorder is fundraising to secure funds for an operation and aftercare, and to pay off debts after having three “life-saving and mobility-saving” operations performed by a specialist doctor in the US.
Firhouse woman Mags Forkan was diagnosed with Ehlers-Danlos Syndrome (EDS) in 2014, when she was 29-years-old, and she described herself as being a “ticking time-bomb” before she got treatment in the US.
Mags explained that EDS affects collagen, “the glue that holds your body together”, by creating faulty collagen and causing symptoms from head-to-toe, affecting your heart, skin, blood vessels, your teeth and your eyes.
Mags told The Echo: “Looking back, I was always sick as a child, my mam kept looking for answers but each thing was treated individually, instead of looking at the bigger picture.
“I don’t remember not feeling pain or not being sick as a child, and it took an awful lot more energy for me to do the same things as my friends.
“I was always breaking joints and clicking joints in and out, but I thought I was just clumsy.”
In her late 20s, the young woman started experiencing severe headaches, neck pain and arrhythmia, which saw her heart rate shoot up to 180.
Her GP then pieced together her symptoms and she was sent to London, where there’s a multi-disciplinary EDS team.
When she got an upright MRI scan in London it was discovered that her neck was dislocating every time she turned her head, and this was catching the vertebral artery that supplies blood to the brain.
“I was put in a hard collar,” Mags explained. “I was told I had a risk of stroke or permanent spinal cord damage. I was a ticking time-bomb.”
Mags then raised funds to see a specialist neurosurgeon in Maryland, who fused her neck solidly into place after her and her family undertook “mammoth fundraising” in order to pay for the surgery.
Mags then had to undergo two additional emergency neurosurgeries, which they had not planned or fundraised for, after she lost all feeling in her legs.
The neurosurgeries were all successful, and now Mags can walk again, but she has to fundraise to cover the debt from the surgeries and also to return to Maryland for a fourth non-urgent surgery for a stent in her jugular vein and for a review in September.
She said: “I feel I owe it to everyone to give it my best shot – my life is now improving day-to-day.”
Mags still has lingering symptoms which affect her every day, including double vision and constant vertigo, which she hopes can be resolved when she returns to Maryland.
The young woman added that she has received no financial support from the HSE and is in regular contact with the nurses who treated her in the US, as there is little knowledge of the condition in Ireland.
The HSE has been contacted for comment.
You can donate to Mags’ Go Fund Me appeal at https://www.gofundme.com/magsedssurgeryfund
