DEDICATED Bangor campaigner Mandy McCreight is appealing to local people to sign a petition calling for better health services for adults and children living with life changing genetic connective tissue disorders.
The mum of two, who is the volunteer area co-ordinator for Ehlers-Danlos Syndromes (EDS) NI, will be well known to many thanks to her DIY SOS house transformation that has given her family a new lease of life.
Mandy, who lives with Ehlers Danlos Syndrome which has body-wide symptoms affecting all aspects of life, was virtually bed bound before the build, living an isolated existence away from her family.
Thanks to the army of volunteers who transformed her family home during the television transformation show, Mandy has been inspired to become a volunteer herself and now campaigns to improve the lives of people living with EDS or hypermobility spectrum disorders (HSD).
She explained the diagnosis and management of people living with EDS have been neglected causing anxiety, distress and unnecessary pain and calls for people to say ‘enough is enough’.
She is urging local people to sign the petition that calls for the provision of suitable NHS services for diagnosis for EDS and HSD in Northern Ireland. Together EDS and HSD affect one in 500 people and the average time to diagnosis in the United Kingdom is 10 to 14 years.
Symptoms include musculoskeletal problems, chronic pain and fatigue, gastrointestinal disturbance, pelvic and bladder problems, autonomic dysfunction and anxiety.
Said Mandy: “We currently have over 700 signatures already in our Northern Ireland petition and we have a target of 1,000 to be reached by the end of October but we would love to smash this target. I would really appreciate if anyone could take a few minutes to sign this petition for the EDS and HSD community in Northern Ireland.”
Keen to ensure the voices of young and old living with EDS and HSD are heard, Mandy was delighted to become a volunteer for EDS UK at the beginning of last year.
She said: “Since the filming of DIY SOS I was very, very keen to be able to give back as a volunteer because without all the volunteers who helped my family we wouldn’t be living our best lives as we are today. My family know first hand how a volunteer can change your life so I wanted the opportunity to maybe be able to do this too.”
She explained her role began as area coordinator for EDS/HSD NI covering all of Northern Ireland and in the first 12 months she had made lots of positive changes in Northern Ireland.
Said Mandy: “I thoroughly enjoy this role as I am able to help people with my extensive EDS knowledge and my family’s experiences. Being able to use my experiences to help others
really gave me a purpose.
“I always felt I wanted to do more so when the role of lead engagement and awareness volunteer for Northern Ireland was announced a few months back I knew that I was the right person for this job. I am currently also still an area co-ordinator too.”
Mandy was spurred on to help improve local services. “Someone has to start conversations in Northern Ireland about EDS and HSD because since I was diagnosed 10 years ago there has been no improvement in the diagnostic and medical treatment of EDS and HSD in Northern Ireland.
“EDS was once considered a rare disease affecting 1 in 5,000 people but today it is not considered a rare disease as they believe it affects approximately 1 in 500. So in Northern Ireland there could be approximately 3,800 people with EDS. “Today we only have 180 members of EDS UK who live in Northern Ireland. There will be people who have EDS in Northern Ireland who are not currently a member of EDS UK but there is still a massive shortfall in the figures.”
Said Mandy: “One of my roles is to improve the awareness of the needs and interests of EDS and HSD in Northern Ireland on behalf of EDS UK. I need to reach as many people who are currently suffering from unexplained symptoms that to date no medical professional has linked together who might have EDS or HSD.
“This will take time to achieve but I will take advantage of any opportunity to attend any event to talk about EDS and HSD. One of my other key roles is to develop and maintain relationships involved in the commissioning of health services relevant to EDS and HSD.”
Throwing a support life-line to people living with EDS, Mandy said: “If you or any member of your family has a diagnosis or suspects they have EDS, please join EDS UK and you can then join our EDS/HSD closed Facebook page.
“Even if you’re not on social media please join EDS UK as you will receive notifications of all our member support meetings in Northern Ireland and also of any progress with the petition. We run a meeting in Belfast, Coleraine and Dungannon and an online meeting every four months. We also offer one to one support by messenger, email and face to face if you’re local.
“If you would like me to come and speak to your group or at an event about EDS or if you or a family member has a query in relation to EDS please do hesitate to contact me at: nisupport@volunteer.ehlers-danlos.org.”
To sign the petition log on to: https://www.change.org/p/provide-suitable-nhs-services-for-diagnosis-management-of-eds-and-hsd-in-northern-ireland
