Campaigner speaks out during Ehlers-Danlos Syndrome awareness month
By Julie Waters
A DEDICATED campaigner is helping ‘make our invisible, visible’ by sharing her powerful story during Ehlers-Danlos Syndrome awareness month.
Twenty-six year-old Amy Jamieson, from Newtownards, lives with this rare disorder that affects connective tissues supporting the skin, bones, blood vessels, organs and tissues.
Amy has shared her experience of living with this painful condition which can cause a range of symptoms including mildly loose joints to life-threatening conditions, as well as chronic pain, fatigue and anxiety.
The local woman hopes that by raising awareness about EDS or hypermobility spectrum disorders (hEDS) this will improve the diagnostic process and provide better care and support for those in need.
To date around 1,500 people across Northern Ireland have signed the EDS ‘Enough is Enough’ petition that calls on the government to fund NHS services for the diagnosis and treatment of EDS and hyper mobile EDS (hEDS).
The campaigners hope to present their petition to Stormont on Saturday, June 1st, when they will be hosting their first ‘Dazzle Walk, Stroll or Roll’ fundraising event at the estate.
Amy has been living with pain all her life as a result of her condition as she recalled: “Since I can remember I’ve experienced pain, I just never knew how to express that to anyone as a child. I bruised like a peach, was injured easily and had extreme joint pain that was usually put down to ‘growing pains’.
“I think my family and I knew something was wrong when I didn’t grow out of these pains. In fact, problems like these started to snowball into issues that were debilitating especially in my teens.
“These were issues such as joint dislocations, gastrointestinal issues, Dysautonomia and other comorbidities that are commonly linked to the culprit itself, a connective tissue disease known as Ehlers-Danlos syndrome.”
She explained how her condition affects her daily life saying: “A day in the life of someone with EDS is waking up to put your joints back into place, and going back to sleep because you’re fatigued and too nauseous for breakfast anyway.
“It’s prioritising health appointments over anything else, remembering to take medication, having to conserve as much energy as possible to get through what the day holds, all while constantly managing pain levels and at least another six or so symptoms throughout.
“A life of EDS has its downsides too. Broken friendships/relationships, career changes, and point blunt grieving for the life that you wanted until your body gave up.
It’s having a brain that wants to do so many things with the time it’s got, but not having the body to live in that can keep up even though you’re only in your twenties.”
Amy stressed the importance of receiving a diagnosis for a condition that has no cure saying: “The validation of a diagnosis in cases like this is crucial, despite there being no cure.
“However, Just like myself, other individuals with rare diseases unfortunately go through an exceptionally long and desperately isolating period of limbo, in which we’re often left to deal with our symptoms alone, or even told that it’s psychosomatic or ‘all in our heads’.
“During my time of working up to a diagnosis, communicating on forums linked to the Ehlers-danlos society (www.ehlers-danlos.com) had really helped me connect to people near my location, who knew what I was going through on the same level.
“This charity, along with people who share the same diagnosis as me, and healthcare workers who are willing to learn and listen, has helped me through some of the darkest moments with my health journey, in which I’ll always hold close to my heart and be deeply appreciative of.”
Amy hopes their campaign will be a ‘catalyst for change’ as she said: “I hope that with getting our stories out, we can ‘make our invisible, visible’ and that awareness can finally be the catalyst to change in relation to better framework of diagnosis and appropriate care and support, especially for those with genetic connective tissue disorders and rare diseases.”
Bangor woman Mandy McCreight, is the lead volunteer for EDS/HSD Northern Ireland, and she urged local people to back their campaign saying: “Nobody should be left to fight on their own. Everybody with EDS should have access to the appropriate medical services and care.
“That’s why we are here and what drives us to work every day. To offer support to anybody touched by Ehlers-Danlos Syndrome.”
To sign the petition log on to: www.change.og/p/provide-suitable-nhs-services-for-diagnosis-management-of-eds-and-hsd-in-northern-ireland?utm_source=share_petition&utm_medium=custom_url&recruited_by_id=55faddre0-
