Support & Information

If you're seeking a diagnosis of Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder for yourself or you child/ children, watch the video above for information (turn volume on). Below is a list of private consultants here in Ireland who have some knowledge of EDS/ HSD and who understand the diagnostic criteria, related specialists who have some knowledge of the conditions and can help towards a diagnosis in some cases or can help once you are diagnosed, and links to the experts in the UK.

I'm hoping to update this section soon with more. I've been given a few suggestions, but the issue I'm finding is that for every person who received a diagnosis through a certain consultant, 2, 3, 4 etc. people are stepping forward saying the opposite about the same consultant. A common thread I've noticed the last few years in that some rheumatologists are fickle, change their mind easily -one year they believe in EDS, then next year they are telling patients it isn't really a health condition. This is a very worrying trend. Because of this, I want to ensure that anyone suggested on this page is fully compliant and capable -they use the correct terminology, they understand hEDS is not rare and that it can cause real, debilitating pain. Most of these are private and therefore expensive, and I would hate to give out information that wasn't correct and for someone in the community to waste their time, engird and money on another dead-end. 

To tackle these 
inaccuracies I plan to contact the suggested consultants and inquire about their current stance and knowledge, so I can ensure the information here is up-to-date. If you want to suggest either a rheumatologist or geneticist who diagnosed you in Ireland or Northern Ireland, send me a message and I'll investigate them to add to the list. 

If you are on Facebook also consider joining one of the many support groups, including three based in Ireland specifically for EDS and HSD. I've also included a list of Facebook support groups and helpful websites for comorbid conditions.

If you have any other questions, feel free to message me and ask through the contact form.

Rheumatologists In Ireland

Dr. Brian Mulcahy
Woodside Rheumatology Clinic, Shanakiel Road,
Co. Cork

Phone: 021 4307947

*PRIVATE*
Brian Mulcahy is probably one of the first names you will hear of in Irish EDS/ HSD support groups. For many years he seemed to be the the only sole private rheumatologist in Ireland with a real invested interest in hypermobility conditions. Pricing for diagnosis is roughly €300-€350, with follow up appointments costing less. His thorough assessment takes a couple of hours and a long report to your referring GP will follow. He has a proven track record of caring for the community here.

 

He usually requests that referral is made through your GP, but if you are having issues call his secretary.

 

Dr. Nicole Ambrose
Blackrock Clinic, Rock Road, Blackrock, Co Dublin A94 E4X7
Phone: 019696565
Email: drnicolaambrose@privateclinic.ie
Website: http://www.drnicolaambrose.ie 

*PRIVATE*
If you are closer to Dublin, another option for you may be Dr. Nicola Ambrose. Her prices are roughly similar to Brian Mulcahy, and she also has an interest in hypermobility conditions and is aware of the diagnostic criteria as well as comorbid conditions.

 

Nicola Ambrose is relatively new on the scene of EDS/ HSD, but the reviews from the community so far have been positive.

Geneticists In Ireland
EDS Specialist Rheumatologists in The UK
Related Consultants In Ireland

Alternatively, some people go to London. There are two specific clinics in London for EDS and HSD, that I am aware of:

The London Hypermobility Unit

The London Hypermobility Unit, Platinum Medical Centre, 15-17 Lodge Road
London NW8 7JA, UK

Phone: 0044 02074835148

*PRIVATE*

I myself have met with Dr Alan Hakim here, although he is currently on leave for research purposes. There are several consultant 

rheumatologists in this clinic - Dr Hanadi Kazkaz (adults), Dr Gayatri Mittal (adults), Dr Roger Wolman (adolescents and adults), and Dr Nathan Hasson (children and adolescents). For bookings contact the phone number above.


Pricing for diagnosis is roughly €300-€350, with follow up appointments costing less, so very similar to Ireland. Of  course though there is at the added expense of flights and accommodation to consider. On top of this, the doctor you meet with might suggest specialist physiotherapy in London as well as certain testing depending on your/ your child's symptoms. Overall pricing will vary for everyone. However many patients who have travelled to London recommend it highly as the private services here in Ireland just to not compare to the level of expertise available in specialised UK clinics.

 

The International Arthritis & Hypermobility Centre
(A newer clinic for children and adults has been set up by

Prof Rodney Graham and Ian Chikanza)

16 Devonshire Street, London, W1G 7AF, UK (adults)
and
84 Harley Street, London W1G 7HW, UK (for children)
Phone: 0044 7444101381

*PRIVATE*

I haven't been but have heard great things, and both are well known for their long-standing work with EDS and HSD. Consultation prices are similar to those at The Hypermobility Unit. Similarly, they can refer on for testing and specialised physiotherapy. 

For bookings call the number above. 

Support Groups, Websites & Organisations

Ehlers Danlos Syndrome
Awareness Ireland

This is one of the three groups based in Ireland. *Joining requirements: Anyone can join the private support group, no official diagnosis is required.
Find EDSAI on their
Facebook Page
and 
Facebook Group 

Irish EDS & HSD
This is one of the three groups based in Ireland. *Joining requirements: Only those with an official diagnosis can join the private support group, you will be asked questions about your diagnosis on clicking the join group option.
Find Irish EDS & HSD on their
Facebook Page
Facebook Group
Facebook Parents Group
Instagram

and Twitter

Ehlers Danlos Syndrome Ireland
This is one of the three groups based in Ireland. *Joining requirements: Anyone can join the private support group, no official diagnosis is required.
Find Ehlers Danlos Syndrome Ireland on their

Facebook Group

The Ehlers-Danlos Society

This US based organisation is the main go to for information, education and research globally.

Find The Ehlers-Danlos Society on their

Website

Facebook Page

Instagram

Twitter

and YouTube

Ehlers-Danlos Support Group

This US based support group operates solely on facebook and is the largest online support group with worldwide members. *Joining requirements: 
Anyone can join the private support group, no official diagnosis is required.

Find The Ehlers-Danlos Support Group on their
Facebook Group

Ehlers-Danlos Support UK
UK based organisation, they have three Facebook support groups although do not have a basic group for all patients. *Joining requirements: 
Anyone can join the private support group, no official diagnosis is required.

Find Ehlers-Danlos Support UK on their

Website

Facebook Page

Facebook Group for Parents

Facebook Group for Partners

Facebook Group for Men

Instagram

and Twitter

Related Support Groups, Websites & Organisations

Irish Dysautonomia Awareness
Many people who have EDS or HSD also have some form of Dysautonomia. Ran by Lette, Irish Dysautonomia Awareness is your go to for all things POTS related (as well as other forms of Dysautonomia). If you need information, see Lette's blog. If you need support and advice for other sufferers, see the Facebook support group. Make sure to follow her public social media accounts too.

Find Irish Dysautonomia Awareness on their

Blog
Facebook Page

Facebook Group

Instagram
and Twitter

Irish Painies
Irish Painies is a Facebook support group I run, for anyone residing in Ireland (including Northern Ireland) with any chronic pain condition.
Find Irish Painies on their
Facebook Group

ME Ireland
For anyone that suffers from chronic fatigue/ ME (Myalgic Encephalomyelitis). "Do you suffer from ME? Does a loved one? This group is set up as a friendly space to chat and interact with others who are going through the same things as you!"
Find ME Ireland on their

Website

and Facebook Group

 

Mast Cell Activation Syndrome

- A hidden epidemic?

This website is newly created by Gavin Tobin, an Irish patient officially 

diagnosed with Mast Cell Activation Syndrome. Here you'll find information about mast cells, diagnosis, and videos on lecturers by Dr. Lawrence Afrin (coming soon).
Find Mast Cell Activation Syndrome on their
Website

 

Mast Cell Activation Syndrome - Ireland

If you have issues that you believe might be relating to mast cell issues (such as MCAS/ MCAD), then Mast Cell Activation Syndrome Ireland is a worthwhile support group to join if you're on Facebook. "This group is an online support page for people with either diagnosed or suspected mast cell activation syndrome (MCAS) in Ireland. Please use this group as a platform to discuss your journey towards diagnosis, offer support to others facing the same journey and to discuss treatments and management strategies."

Find Mast Cell Activation Syndrome - Ireland on their

Facebook Group

POTS UK

POTS UK (Postural orthostatic tachycardia syndrome - The most prevalent form of Dysautonomia) is a UK based charity who provide information and support about the condition.

Find POTS on their

Website
and Facebook Page

Chronic Pain Ireland

Chronic Pain Ireland provide information and support to anyone living in Ireland with chronic pain conditions. They also organise public talks and run a support phone-line.

Find Chronic Pain Ireland on their

Website

Facebook Page

and Twitter