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We want to hear from you: please tell us about your experience of the online community.

Hi, my name is Jodie1!

Jodie1

Hello, my name is Jodie. I have been struggling for what feels like forever and yesterday I was given a link to Scope as I received a diagnosis of HEDS. Its nice to finally be able to gain support but also feels a bit surreal. Im still the same person but the drive to learn how to manage pain and deal with this is quite high. Please reach out if you would like to network. Speak soon x

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chiarieds

Hi @Jodie1 - & welcome to the community, Jodie. As someone who also has hEDS it's good to 'meet' you 😊

Jodie1

Hi Chiarieds,

Thank you so much for reaching out. May I ask how long you have know and what places you have found really supportive? Xx

chiarieds

Hi, I've known I have hEDS for about 25 years; I thought this had affected myself & family through trying to researching, then was advised on a consultant to see who confirmed this.

As a retired physio I maintain doing gentle exercises & have been pretty much left to my own devices! I've had to advocate for my children & grandchildren all of whom have hEDS - well the youngest is awaiting a diagnosis & is also waiting for a referral to see if she has postural orthostatic tachycardia syndrome (PoTS).

Albus_Alumni

Heya @Jodie1 and it's a very warm welcome to the community from me too.

I'm glad Chiarieds and yourself have found each other, you're definitely in good hand for all things hEDS related. 😁

Jodie1

Wow that must be really hard. My best friend has EDS and dislocates regularly so I have an understanding, as well as POTS and its sad to see the lack of support provided. I hope your family are ok also.

Thank you Albus, much appreciated x

chiarieds

Do you have much support? My GP is very good as he used to look after the founder of our UK EDS support group, tho she had the classical type. it was the founder who advised on the consultant to see who was a geneticist & dermatologist who'd specialised in hereditary connective tissue disorders; he diagnosed my son & I, then we all met with a rheumatologist again, who of all things specialised in hypermobility & the performing arts! He diagnosed my daughter.

My 2 eldest grandchildren were diagnosed later, after a consultant suspected hEDS in my middle grandchild following surgery for her unilateral talipes (my son had bilateral talipes). All young children can be quite hypermobile so we waited a while until they were older before getting a diagnosis confirmed.

Our family is also affected by Chiari 1 Malformation (neurological problems) which can be associated with EDS, which is why my username is 'chiarieds.'

Having said all that, my son & I haven't seen our GP since 2017; my family just ask me all the questions. My daughter's GP has been good, & rang me up about her a couple of months ago so I could explain things to her. My son & I have just had our annual echocardiogram a week ago as there have been concerns from the start that he looks 'marfanoid.' I'm trying to get it sorted so my daughter gets these put into place regularly as we've managed these for her children already.

There's some info here about ways to try & deal with chronic pain, & often it's a combination of modalities that works the best; it's finding the ones that work best for you. I find diaphragmatic breathing very useful for starters; it's in the 'deep breathing' link.

https://forum.scope.org.uk/discussion/102784/resources-and-tips-for-those-living-with-chronic-pain