TD Letters & Press Releases
Our TD letter for May awareness 2019 is now closed, but keep an eye out for future letters to sign. If you want, you may copy and paste the letter (whole or in parts) and send as your own. The more letters in circulation, the better. Click the PDF symbol to open and save.
Dear Deputy ---
We are a community of people living in Ireland suffering from Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD). These conditions can be debilitating, especially without early diagnosis and intervention, which is proving nearly impossible for those living in Ireland.
Our collagen (a connective tissue that works like the glue of the body) is faulty, which makes our joints loose. Our joints can partially dislocate on a daily basis -the condition varies, but for some these partial dislocations (subluxations) occur all over the body. EDS and HSD are chronic pain conditions. Many patients struggle daily to control and manage their pain.
These conditions aren’t just about painful subluxations, however. They are multisystemic conditions that can affect sight, hearing and digestion, and a host of other issues. Basically any part of the body that contains collagen. There are also comorbid conditions that can affect heart rate, blood pressure, cause allergic reactions, and a whole host of seemingly unrelated health issues. As the saying in the community goes -“If you can’t connect the issues, think connective tissues”. Internal organs can also be affected, particularly with vascular EDS, and some instances can be life threatening.
The current situation in Ireland is that there is not one qualified rheumatologist, or other consultant, to deal with the multisystemic degrees of our conditions. The HSE has not trained and appointed even a single person, and there is no official, unified healthcare plan in place to deal with our cases throughout the country. We are told time and time again by the HSE that all rheumatologists in Ireland are well-versed on our conditions, which quite frankly is an insult to those of us who have been through the system for decades. As a community we meet with many rheumatologists who have either never heard of EDS or HSD, or who only know of outdated terminology and have minor knowledge of hypermobility types, diagnostic criteria or comorbid issues. Others simply do not believe that these are health conditions. Diagnoses is particularly hard to receive of course, with so few rheumatologists being EDS/ HSD aware. There are a handful of private rheumatologists who have taken our side, but their expertise is limited in parts, and quite frankly this is just not good enough. Physiotherapists and occupational therapists who are trained to deal with hypermobility conditions are also not available in every county, and can be hard to locate. Because of delays in diagnosis (sometimes in adulthood rather than childhood), and lack of available healthcare once diagnosed, some people deteriorate at alarming rates.
The other option we have as desperate patients is to turn to the UK, particularly the London Hypermobility Clinic. Their expertise and vast knowledge of our conditions and comorbid conditions isn’t even comparable to the abysmal situation here in Ireland. As you can imagine, these visits and tests that we cannot obtain here at home (such as upright MRI used to diagnose potentially dangerous issues), are very expensive. Fundraisers organised by family and friends and GoFundMe accounts are a common occurrence in many of our lives. We cannot access the treatment abroad scheme because:
A. The London Hypermobility Clinic and many of these UK tests are private clinics
And
B. We cannot prove that we need the treatment abroad scheme if the HSE continue to insist we can access the healthcare we need here. Our Lady’s Hospice in Harold’s Cross, Dublin is often cited as a the go-to centre for treating EDS and HSD. However they take very limited cases on, and when they do they often discharge us back to our GP after one or two admissions -alluding back to how they do not treat hypermobility conditions. While the EDS/ HSD patients that do attend benefit greatly from the hydrotherapy and physiotherapy they provide, it seems the health minister is not listening to the hospices repeated insistence that they are not equipped to deal with our cases. Or as the case may be, do not have the funding.
As our conditions are genetic, often whole families are affected. In many cases we see that a parent must choose their children’s health over their own, when the financial burdens are too high. This cannot continue. Travelling for healthcare and being dismissed so easily by the HSE must come to an end. We deserve real healthcare, here at home. Please stand with us in our campaign and help expose our situation.
On May 23rd (1PM-2.30PM) we will be assembling outside Leinster House, calling for a qualified consultant to be appointed by the HSE, current staff to be trained in hypermobility conditions and the comorbid conditions, and real healthcare here at home for Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder sufferers.
See our public event on our Facebook page to keep up-to-date.
We look forward to your response.
See the campaign website for further details-
And feel free to contact through- eds4ire@gmail.com
Signed-
1. Catherine Colbert - Knockbridge, Louth
Hypermobility Ehlers-Danlos Syndrome patient
#EDS4IRE Campaign, Irish EDS & HSD committee member
and Dundalk for Change committee member
Blog over at
2. Simon Byrne - Knockbridge, Louth
Carer (to wife with EDS)
Dundalk for Change committee member
3. Andrea Dixon- Enfield, Meath
Hypermobility Ehlers-Danlos Syndrome patient
and parent to hypermobile son
4. Sinead CM - Newbridge, Kildare
Hypermobility Ehlers-Danlos Syndrome patient
5. Paul M - Newbridge, Kildare
Carer (to wife with EDS)
6. Gill Molloy - Cork
Hypermobility Ehlers-Danlos Syndrome patient
7. Gillian Kearns - Waterford
Awaiting diagnosis for HSD/EDS (undiagnosed due to financial constraints)
& parent to a child with suspected HSD/EDS
8. Aisling Cahill - Wexford
Hypermobility Ehlers-Danlos Syndrome Patient
9. Vicki Cadogan - Limerick
Ehlers-Danlos Syndrome Patient
10. Marion Kearns - Wicklow
Grandmother to a child with hypermobility
11. Katherine Grant - Galway
Carer (to daughter with EDS)
12. Rebecca Grant - Galway
Hypermobility Ehlers-Danlos Syndrome patient
13. Marguerite Geraghty - Belmullet, Mayo
Joint hypermobility syndrome patient
& parent of 3 teenagers with hypermobility syndrome
14. Patricia Adams - Dublin
Hypermobility Ehlers-Danlos Syndrome patient
15. Louise Garrett - Dublin
Hypermobility Spectrum Disorder patient
16. Aoife Nielsen - Donegal
Hypermobility Spectrum Disorder patient
with possible EDS but no diagnosis, still navigating the system
17. Jeremy O'Dubhslaine - Dublin 8
Hypermobility Ehlers-Danlos Syndrome patient
18. Joann Hevey-Rath - Leixlip, Kildare
Mother of child with Hypermobility Ehlers-Danlos Syndrome
19. Eimer Cranny - Meath
Hypermobility syndrome patient
20. Nem Kearns - Dublin 6
Disabled Women Ireland and Together for Yes campaign team,
awaiting diagnosis of EDS/HSD
21. Anne Marie Maher - Thurles
Parent of girl with EDS and POTS
22. Gaynor Donnelly - Dublin
Hypermobility Ehlers-Danlos Syndrome patient
(POTS, Chiari malformation, craniocervical instability, atlantoaxial instability.)
23. Cheryl McGuinness - Galway
Hypermobility Ehlers-Danlos Syndrome patient and student nurse
24. Michael Shevlin - Dublin
Parent of 3 children with Hypermobility Ehlers-Danlos Syndrome
25. Roisin Mimnagh - Dublin
Parent of 3 children with Hypermobility Ehlers-Danlos Syndrome
26. Patricia Adam - Dublin
Hypermobility Ehlers-Danlos Syndrome patient
(diagnosed age 56)
27. Kim Arthur - Blackrock, Louth
Hypermobility Ehlers-Danlos Syndrome patient
Blogger and advocate at Chronically Kim:
(instagram: chronicallykim, Facebook: Chronicles of Kim)
28. Monica Cheevers - Dublin
Ehlers-Danlos Syndrome patient
29. Ruth Dolan - Dublin 13
Hypermobility Spectrum Disorder Patient
30. Michael Cunningham - Westmeath
Hypermobility Ehlers-Danlos Syndrome Patient
31. Elizabeth Halliday - Westmeath
Hypermobility Ehlers-Danlos Syndrome Patient,
parent to a child with EDS and midwife
32. Adrian Carroll - Killarney, Co. Kerry
Disability Rights Advocate and Disability Advisory Committee member at
the Irish Human Rights and Equality Commission
33. Enough Is Enough -Every Voice Counts - National
Disability Campaign group
34. Dawn Finnerty - Galway
Ehlers-Danlos Syndrome patient
35. Dawn McManus - Athlone, Co. Westmeath
Chronic Pain Ireland member
36. Rebecca Spearman - Tipperary
Ehlers-Danlos Syndrome and POTS patient
37. Sarah Spearman - Tipperary
Ehlers-Danlos Syndrome patient
38. Ruby Morrissey - Westmeath
Ehlers-Danlos Syndrome and patient
39. Ian Tyrrel - Westmeath
Father to daughter with Ehlers-Danlos Syndrome
40. Elaine Morrissey - Westmeanth
Mother to little warrior girl with Ehlers-Danlos Syndrome
41. Sarah Spearman - Tipperary
Ehlers-Danlos Syndrome patient
42. Michelle Boyle - Donegal
Ehlers-Danlos Syndrome patient
43. Faye - Meath
Mother to son with Ehlers-Danlos Syndrome
44. Catherine Ryan - Cork
Ehlers-Danlos Syndrome patient
and mother to children with Ehlers-Danlos syndrome
45. Michael Cunningham - Athlone
Hypermobility Ehlers-Danlos Syndrome Patient
46. Teresa O'Hara - Kerry
Mother to child with Generalised Hypermobility Spectrum Disorder
47. Margaret Browne Murphy - Kildare
Hypermobility Ehlers-Danlos Syndrome Patient
48. Monica Walsh - Cork
Parent of child with Hypermobility Ehlers-Danlos
49. Sarah Walsh BLC - Cork
Hypermobility Ehlers-Danlos Syndrome and POTS Patient
50. Lisa Hopper - Dublin
Ehlers-Danlos Syndrome Patient
and singer/ songwriter
51. Felicity Scott - Dundalk, Co. Louth
A human with empathy
52. Annette Hopper - Athlone
Hypermobility Ehlers-Danlos Syndrome and POTS Patient
and mother to daughter with Ehlers-Danlos Syndrome
53. Laura Ricken - Cork
Awaiting diagnosis of hyper mobility condition
54. Letitia Ni Bhriain - Cork
Parent and carer to young adult with Ehlers-Danlos Syndrome
55. Helen Naughton - Athlone
Childcare Worker
56. Amanda McKeever - Dublin
Hypermobility and Vascular Ehlers-Danlos Syndrome patient,
possible Marfan Syndrome too
57. Ailís Teape - Weastmeath
A friend's child has HSD
58. Niall Flynn - Athlone
Friend off affected family
Updated: 15/05/2019
Our May Awareness Month press Release highlights the issues EDS and HSD patients experience in Ireland in regards to diagnosis and treatment as well as promotes our protest outside Leinster House on May 23rd. If you want to send a copy to a local news source please do, but let us know so we don't overlap. Click the PDF symbol to open and save.
E-mail
PRESS RELEASE
FOR IMMEDIATE RELEASE
Ehlers-Danlos Syndrome Awareness Month: Gathering at the Dáil Calling for a Consultant to be Appointed for EDS
On Thursday May 23rd the #EDS4IRE campaign are inviting people to assemble outside Leinster House, Kildare Street, Dublin, for a protest between 1PM-2.30PM. They are demanding that the government commit to providing real healthcare here in Ireland for patients of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder.
Ehlers-Danlos Syndrome is a complex genetic, connective tissue disorder resulting in faulty collagen. Collagen is known as the glue that holds the body together. Because of this fault, patients' joints can partially dislocate (sublux) and sometimes fully dislocate on a daily basis, leaving them in varying degrees of pain. As the human body contains quite a large amount of this protein, it can impact almost every system in the body. For example, eye sight and hearing may be affected. Healthy collagen is needed for holding body parts together like skin, joints, muscles, ligaments, blood vessels and internal organs. A whole catalogue of issues may arise; some, life threatening. Hypermobility Spectrum Disorders varies to EDS, but has a huge degree of overlap in symptoms and issues (most notably, hypermobile joints). How much these joints over extend will vary from patient to patient, as hypermobility is on a spectrum.
In Ireland there is not one qualified rheumatologist appointed by the HSE, to deal with the multi-systemic degrees of these conditions. There are a small number of private rheumatologists who have taken an interest, but they are expensive. Patients often meet with rheumatologists who have either never heard of EDS or HSD, or who only know of outdated terminology and have minor knowledge of types, diagnostic criteria or comorbid issues. Physiotherapists and occupational therapists who are trained to deal with hypermobility conditions are also not available in every county, and can be hard to locate. Because of delays in diagnosis (sometimes in adulthood rather than childhood), and lack of available healthcare once diagnosed, some people deteriorate at alarming rates. The other option sufferers have is to turn to the UK, particularly the London Hypermobility Clinic. Their expertise and vast knowledge of hypermobility conditions and comorbid issues isn’t even comparable to the abysmal situation here in Ireland. As you can imagine, these visits and tests that that cannot obtain here at home (such as upright MRI used to diagnose potentially dangerous issues), are very expensive. Fundraisers organised by family and friends and GoFundMe accounts are a common occurrence in many patients lives. They cannot access the treatment abroad scheme because:
A. The London Hypermobility Clinic and many of these UK tests are private clinics
And
B. Patients cannot prove that they require the treatment abroad scheme if the HSE continue to insist they can access the healthcare we need here. Time is often an issue in emergency cases.
The #EDS4IRE petition was set up by Ehlers-Danlos Syndrome sufferer Kitty Colbert, who like many patients has had to fundraise for tests and treatments in London. She didn’t receive her official EDS diagnosis until her early 30’s, even though she experienced chronic pain and subluxations her entire life. Later she was also diagnosed with comorbid issues such as Postural Orthostatic Tachycardia Syndrome and Chiari Malformation (thanks to an upright MRI, only available in London and not in Ireland). She set up the petition, and later the website to provide more information, for the greater EDS community in Ireland to use how they wish in their advocacy endeavours.
The date was chosen as May is Ehlers-Danlos Syndrome awareness month. Kitty hopes that this will be the first of many gatherings outside Leinster House calling for health care reform for hypermobility conditions, and asks that those who are affected to invite family and friends to stand with patients in solidarity on the day. As those with conditions like EDS are known as zebras in the medical world, participants are asked to come dressed in something zebra print or black and white and bring a sign with any relatable slogan. There is a facebook event for those on social media who wish to stay up-to-date on news about the day:
If anyone is worried they may be affected by these conditions and require further information, they can contact the campaign and find details at:
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