A young Dublin woman who suffers from a rare disease is appealing for help to pay for life-changing surgery in the US.

Megan Forkan, 32, known as Mags, suffers from Ehlers-Danlos Syndrome (EDS), a rare genetic connective tissue disease that results in faulty collagen throughout the body. Collagen is essentially the glue that holds the body together.

This means the symptoms of EDS can be very far reaching, affecting most parts of the body - dislocation of her joints due to laxity of connective tissue, gastrointestinal issues resulting in constant nausea and weight loss, autonomic nervous system issues which results in Mags having rapid increases in heart rate. She gets palpitations just from standing and her blood pressure drops from postural change. This results in fainting and chronic fatigue. Mags’ joints have deteriorated throughout her body and her muscle tone has declined, causing severe pain.

Ireland’s health system has no specialists dealing in EDS, resulting in Mags having to travel for treatment to London, all at her own expense.  Her most devastating diagnosis came last year as a result of an MRI of her neck and brain, when she found that her brain is descending into her spinal canal and that her neck is dangerously unstable and could result in dislocations, loss of blood supply or spinal fluid to the brain, or even internal decapitation.

Mags, who got married last year to her husband, Jimmy, is now fundraising for life-saving neurological surgery, which is not available at home or in the UK.

“Our first year of marriage has been the marriage from hell. It’s not like most people’s experience of marriage when you’re supposed to be starting your life together, but we’ve had to fight to get me the treatment that’s needed to stop me from deteriorating any further.”

Her family and friends have raised a large amount of money and succeeded in getting Mags to the world expert in Maryland for surgery, and she has had 2 surgeries to date, which have stabilized her neck to some extent. 

However, the situation is graver than originally thought and Mags needs more radical surgery which is scheduled to take place on June 1, but the unexpected costs mean that more funds are needed.

Mags is so grateful for the donations that have brought her this far and looks forward to a return to a normal life as a result of the final surgery, “It’s a very specialized surgery. But it has a 95% chance of improving my quality of life. I will still have to manage my condition, but this will let me live my life.”

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To donate, click here to visit Mags' GoFundMe page or you can transfer to a bank account: Ulster Bank Dublin Ac 15088739 Sort code 985040 Iban IE56ULSB98504015088739

Mags ForkanFacebook / Mags: The girl in the striped zebra pajamas - my life with EDS