‘It’s important to see someone with a disability be Pro Choice in this debate'

“I CAN’T get pregnant again because I’ll die.” So says Clonakilty-based mother-of-two, Evie Nevin, who has Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder.

It means that sufferers produce faulty collagen — the glue that holds the body together and makes up 25% to 35% of all the protein in the body. The condition can affect all systems of the body.

People with EDS have collagen that is like chewing gum. This can lead to a massive range of symptoms including soft tissue injuries, dislocations, hypotension, gastrointestinal and cardiac issues.

There are 13 type of EDS ranging from mild to life-threatening type vascular EDS.

Evie has set up Disabled People for Choice. She says her life “is on the line”. If she had another child, she says she would be leaving behind her young children, who also have EDS, and her husband, Martin.

After the birth of her second child, Olivia, now aged three, Evie haemorrhaged and was in and out of consciousness.

“You can take all the contraceptives in the world but no contraceptive is 100%,” says Evie who can’t get a tubal ligation because of her relatively young age, 31, and possible complications arising from her condition.

“The reason I set up Disabled People for Choice is because people forget that disabled people also need reproductive rights. They people are twice as likely to be sexually assaulted. Travelling to the UK for an abortion would be a logistical nightmare for people with disability. You’d need a carer and there are the costs.

“The majority of people with disabilities are on low incomes. Repealing the eighth amendment is about having choices.

“I know there is a lot of talk, particularly from the anti-choice side, that people with disabilities will be wiped out (if the 8th Amendment is removed from the constitution). But the thing is with the proposed legislation, only fatal foetal abnormalities will be allowed to be terminated after 12 weeks. Non-fatal disabilities won’t. The whole idea of eugenics is not going to happen.

“At the end of the day, what a woman decides is between her and her doctor. It’s health care. I’m involved in raising awareness through our facebook page. We’re debunking myths. I’m also volunteering with West Cork Rebels for Choice and I’ll be canvassing for that. I think it’s important for people to see someone with a disability who is pro-choice.”

That said, Evie describes her illness as “invisible”.

“I look healthy. But you’ll see me some days, down town, in my wheelchair. The next day I might just have to use my cane or another day, I’ll be fine.”

She is not just campaigning for herself and other women with disabilities.

“I have to think of my children, whether Olivia decides to have children or not.”

And if Evie’s eight year old son, Alex, was to have a family, how would his partner be affected?

Evie had a long road before she got her diagnosis at the age of 26, through researching a newspaper article on rare diseases.

“Since my parents adopted me when I was six weeks old, it was noticed that I was a really floppy baby. Then, growing up, I had all sorts of issues with my motor skills. I used to complain about pain. Doctors always said it was growing pains. When I was about 14, I started complaining about my knees. They were the first thing to go from me. Before that, I was really active, doing taekwondo, horse-riding and Irish dancing. I had to stop all that and I kind of deteriorated from there. Because of the pain in my joints, I was convinced I’d end up with a diagnosis of arthritis. But tests showed I didn’t have arthritis.”

When Evie went to a GP at the age of 18, she complained about being tired all the time and having a lot of pain. She was told she was depressed and put on anti-depressants.

“I was on anti-depressants for eight years until I got my diagnosis. I didn’t think my pain was due to depression. Every pill on the market for anti-depressants was tried on me. I wasn’t getting any better. Then I got pregnant with Alex. Everything went haywire. I started getting dizzy.

“I had pain in my pelvis but was told that was something that could happen in pregnancy. It set everything off. For the first three years of my son’s life, I was in bed constantly, sleeping a lot. I wasn’t really functioning.”

Evie managed to do a six month internship with a newspaper in 2012, having gained a degree in journalism from Griffith College. It led her to getting her diagnosis.

“I wanted to enter the European Health Journalist awards. The theme was rare diseases. I got onto the genetics and rare diseases organisation and asked to be put in touch with someone suffering from a rare disease. They put me on to a girl in Kinsale who had EDS. I really felt for her. She was in pain all the time and couldn’t get any help in Ireland. She had a multitude of symptoms. Her story stuck with me and we kept in contact. About a year later, I did an update on her story. She’d had to go to the UK for treatment.

“I was telling her about my issues and Sarah asked me just one question which completely changed my life. She asked me if I was hyper-mobile, what people call ‘double-jointed.’ I said ‘no’ and that I was stiff as a poker. But Sarah got me to do various things and said I was hyper-mobile. I had been to a physiotherapists but was never told that.”

Sarah told Evie about a doctor in Cork who was aware of EDS.

“I said I’d look into it. One day, I fainted and decided I was going to have to find out what was going on. Dr Brian Mulcahy said I had EDS and he added that it was no wonder I was depressed because nobody believed me. He said I needed physiotherapy, occupational therapy and a pain management specialist.”

Excessively loose joints are the hallmark of hyper-mobility disorder as suffered by Evie and her children. Large and small joints are affected. Partial and total joint dislocations are common along with chronic limb and joint pain.

About one in 5,000 people worldwide suffer from EDS. The condition is most often hereditary but in 25% of cases, including Evie’s case, the gene for EDS mutates with no family history of it. Because it’s a pre-existing condition, Evie says it’s impossible to get health insurance.

Getting the diagnosis “was bitter-sweet,” she explains, “I knew what was wrong with me. It wasn’t all in my head. I’m not lazy. A lot of people had said I was because I had difficulty getting up in the morning and generally trying to get going. I finally had a name for my condition. But it’s incurable.”

Evie says very little is known about the condition in Ireland.

“From getting the diagnosis, I was faced with a mountain. I had to find people who could help me. That’s almost harder than getting the diagnosis. There are doctors here who are aware of EDS and who are helpful but they are by no means experts. From my experience, those that are aware of it happen to be private doctors. To get insurance, I’d have to pay about €5,000 for a five year waiting period before I’d even be considered.”

Evie has had to travel to the UK for specialist treatment. Last year, that cost the family €10,000, a huge sum of money for Evie who is on a disability benefit. Her husband, Martin, who was announced as Cork Carer of the Year in 2017 for looking after his family, works occasionally as a videographer. The family has had to rely on the kindness of strangers and their families.

“We had a coffee morning in Clonakilty and thought it would raise a couple of hundred euro. It actually came to €800.

“The Government has let us down. It’s down to people who don’t know us, giving us money out of their own pockets. Going to the UK made a world of difference because we were believed straight away. The specialists there spent an hour and a half with both me and Alex.”

Evie has to come up with €2,000 for a number of procedures including injections in her head and pelvis.

“My pelvis dislocates on a daily basis. I can’t afford to go to my physiotherapist every day to put it back in place.”

Evie has to manage this herself. Her aim is to be in a position where she won’t need pain management.

Alex is aware that he has EDS and injures his back a lot.

“He’s constantly covered in bruises, he gets tired and has sensory issues which means that going food shopping can be overwhelming for him with the noise and the lights.

“Olivia has had four dislocations already. I’ve been able to move her joints back in on two occasions.”

Life is stressful for the Nevins. If you would like to support them see their GoFundMe page or follow Evie on Facebook. Also see her blog on www.thezebramom.com.