A DUBLIN WOMAN who suffers from a rare disease has undergone two surgeries in the US, but is appealing for help as one of those was unexpected.
Megan Forkan, known as Mags, suffers from Ehlers-Danlos Syndrome (EDS), a rare disease that attacks the connective tissue in the body.
Last month, she told TheJournal.ie that she was raising funds for the highly-specialised surgery in order to ‘get her life back’.
After flying to the US, Mags had surgery on her neck to tackle her cervical, cranial instability (CCI), a condition that leaves the neck and head unstable and makes even turning her head a risk.
While this was planned for, what happened next wasn’t.
“I had that surgery on the Tuesday and that was complicated enough,” she tells TheJournal.ie from Maryland.
“I needed a blood transfusion as my blood vessels are extremely fragile because of EDS. It showed me that my EDS affects every part of me and how lucky I was to be in the care of an EDS specialist who considers the complexities of EDS in all surgeries.
“But it was a success. I will have some lasting spinal cord damage but he’s stopped me from being a risk of a stroke and dislocating my neck.”
However, complications meant that Mags became sick, “poisoned” by her own medications. But that was only the beginning.
My mobility has been getting worse in my legs, but there’s so much going on that you don’t know what to react to. I brought it up with a doctor and it was discovered that I had very little sensation in my legs. He was pricking me with a pin and I couldn’t feel it.
That lack of feeling was caused by a tethered spinal cord, a condition that required another surgery on top of the one already carried out and one that is now planned for next week.
“It means that the spinal cord is pulled extremely tight – it is a rare and a progressive neurological condition. It needed urgent attention as left untreated, it would have resulted in serious irreversible spinal cord damage and could possibly have led to severe mobility issues and incontinence.”
“they usually wouldn’t be done so close together, but they had to be done urgently’.
This meant Mags needed two major neurosurgeries within just five days.
Fundraising
That unexpected surgery means that a fundraising target, previously €100,000 has had to be raised to €130,000.
The huge outpouring of support and help has touched Mags, who says that she feels blessed. However, with just three months in the US in which to get the surgery she needs, time is of the essence.
“I need to be stronger for the next surgery, but I can barely hold down water because of the compression in my neck. I still have spinal cord compression and that can still cause me mobility issues.”
That extra hospital admission, for a second serious surgery in a matter of days, left Mags feeling like she had to recover as something of a payback for those who had supported her.
“You feel pressure when you’re fundraising not to let people down. But I know my recovery is not a sprint, it’s a long-term thing. I don’t think I was mentally ready for the pain in the back. It completely wiped me.
“I’m very lucky that my mam and husband are here and the generosity of people has been amazing. People that don’t even know me have given me this opportunity. I’m the luckiest person in the world to be in this neurosurgeon’s hands.
“I’m just so grateful and blessed. I can’t complain even if I am in pain.”
This month marks EDS awareness month and EDS Awareness Ireland is running a number of events that you can see here.
To donate, click here or you can transfer to a bank account: Ulster Bank Ac 15088739 Sort code 985040 Iban IE56ULSB98504015088739
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