Support & Information

UPDATE 20/9/2020

I have contacted some consultants that people have suggested, and they have either not responded/ responded in full, or they have politely declined (but wished patients all the best with their healthcare). It's unfortunately the usual fear of not wanting to commit to helping patients without being instructed directly by the HSE, and not feeling confident in diagnosing Ehlers-Danlos Syndrome/ Hypermobility Spectrum Disorders.

Do you have a review of a specific consultant you have met with in Ireland/ Northern Ireland? I'm thinking of having a real-life (totally anonymous of course!) review section. Maybe you had a very bad experience with a consultant you went to speak with about POTS. Maybe you had a great experience with a Rheumatologist and he/ she accurately diagnosed your EDS/ HSD? I'll put quotes from these on the website, so others have a clearer idea of what to expect. 


Send suggestions and reviews via the contact form. They can be with public or private specialists, in the republic or in the north. Make sure to give name of consultant, type of consultant, town/ city, and whether they are public or private. All information will remain 100% anonymous. If you want to give a short (I'll probably only use a small quote for the website -unless someone emails me asking about them particularly, and then I may tell them your whole review, if required. Again, your review will always remain 100% anonymous). 

What type of consultant are we looking to list here?

Rheumatologists for Ehlers-Danlos Syndrome

& Hypermobility Spectrum Disorder

 

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 and HSD are not rare and that they 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, energy 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'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.
 

Cardiologist

Gastroenterologist

ENT

Physiotherapist

Neurology...

...And so on.

Any consultant/ specialist that may be related to EDS/ HSD and our comorbid conditions.

For these comorbid conditions, I won't be so strict on criteria (IE they don't have to be EDS/ HSD experts as they aren't involved in the diagnosing process -Or experts in their fields). Once they know about the comorbid condition and believe/ test/ treat to some degree.

Rheumatologists In Ireland
EDS Specialist Rheumatologists in The UK
Related Consultants 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, the reviews from the community so far have been mixed. Like Brian Mulcahy, she knows about joint hypermobility and would not have a huge amount of expertise with the co-morbid issues.

Geneticists 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

 - Cardiologist -
Dr. Jonathan Lyne
34 Suite, 
Blackrock Clinic,

Blackrock, Dublin.

Phone: 087 622 1793 /

01 206 4559

Email: jonathan@heartrhythmcardiologist.com

Website: 

www.blackrock-clinic.ie/consultant/lyne-dr-jonathan 


*PRIVATE*
Think you have POTS/ some form of Dysautonomia? Dr Lyne in Dublin  has some experience, at least and isn't dismissive of the idea. I was diagnosed through here, but be prepared to lead the appointment... If someone attended this consultant, and wasn't aware they had POTS/ didn't know to suggest a form of Dysautonomia, then I'm not sure if he would suggest a TTT (Tilt Table Test) or lead towards that diagnosis early on.

Also note (unless they have acquired one recently), that Blackrock Clinic has no Tilt Table and so if you want this test you will be referred to an outside clinic.

Related Support Groups, Websites & Organisations

Department of Clinical Genetics, Crumlin Cooley Rd, Children's Health Ireland at Crumlin, Dublin, D12 N512
Website:
https://www.olchc.ie/Services/Departments-A-Z/Department-of-Clinical-Genetics

*PUBLIC & PRIVATE*
This clinic is for both adolescence and adults. First of - Be prepared for a long wait. While every case differs, many wait on average two years publicly (note: I'm currently waiting over two years). On top of this, you or child may eventually be seen and denied the genetic testing. It's also not uncommon for them to deny testing a child or adult with Ehlers-Danlos Syndrome, that they have never even met with.

There is currently no genetic test available for hEDS (hypermobility type EDS), as the exact gene mutation has not been pinpointed. However, you may want genetic testing for you or your child if you suspect vEDS (vascular) or cEDS (classical).

You also have the option to go private. I hear it's roughly €600 - €300 for basic genetic test, and €300 for appointment (if you have updated information on this, please contact me). Although even privately, as an EDS/ HSD referral, you may be refused. 

For appointments, ask your GP to refer you.

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

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 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 Group
Facebook Parents Group

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

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 Page
and 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

Chiari Malformation Ireland - Support & Advocacy

If you have been diagnosed with Chiari Malformation then this is the group for you. While there are several groups on Facebook, this is the only one based in Ireland

Find Chiari Malformation Ireland - Support & Advocacy on their

Facebook Group