My 23 year old granddaughter has 'Hyp... - Hughes Syndrome A...

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My 23 year old granddaughter has 'Hypermobility Syndrome' does anyone know if there is a connection with this condition and Hughes Syndrome?

JoyceyMee33 profile image
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JoyceyMee33
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Angelpaws profile image
Angelpaws

Hi Joyce, I don't know if there is a connection, but I was diagnosed with it by my Rheumatologist at the same time as my APS (Hughes Syndrome) diagnosis. It will be interesting to see what other people say. Larraine x

MaryF profile image
MaryFAdministrator

Hi there, many of those with autoimmune disease, including APS do appear at times to suffer from a range of autoimmune diseases, or have other family members who do., so I am guessing that some people will have this alongside APS, however beyond that I don't know, others may have further detail. I have in my own wide circle of friends met a woman who indeed does have this syndrome and has now been told that she has APS! Mary F x

JoyceyMee33 profile image
JoyceyMee33

Thank you for your replies. I will have a word with my son and daughter-in-law and suggest they talk to her about being tested for APS etc:

Thanks once again.

editfmrt profile image
editfmrt

Two of my young grandsons have recently been diagnosed with hyper mobility syndrome. Our family has a high prevalence of autoimmune thyroid problems - Hashimotos and Graves with RA thrown in. My sister has Hashis and currently trying to get them to confirm diagnosis of Hughes as she has many symptoms and antibodies. I can say we fit the profile of autoimmune conditions often going hand in hand. I would look for her to be tested for thyroid and ask for full autoimmune antibodies screening tests.

JoyceyMee33 profile image
JoyceyMee33 in reply to editfmrt

Thank you for reply. As I mentioned to Helene I have suggested my Granddaughter is tested further. I will certainly tell her parents that she should have her thyroid investigated as well. Genes Eh!!!

Take care .Joyce

Helene profile image
Helene

Hypermobility Syndrome is a range of conditions, some more serious than other, most of them rather benign, you need to find out if your granddaughter is diagnosed with a more specific diagnose or is going to be referred for more tests to get a specific diagnose. None of the hypermobility syndrome diagnoses are autoimmune conditions and they have no link to APS/Hughes Syndrome, it’s just bad luck if you turn out to have both!

I have a hypermobility syndrome condition called Ehlers-Danlos Syndrome, I was born with it, and diagnosed with hypermobility syndrome age 16 but only got my specific diagnose - EDS about 8 years ago. It was a revelation and answered a lot of questions for me and many of my doctors! I am now 48 years old and have a very long list of conditions, APS and EDS are only two, I have a few more autoimmune conditions too, but to reiterate, hypermobility syndrome is not an autoimmune condition and it is not one condition but can be seen in a range of conditions.

Good luck with everything!

Take care, Helene

JoyceyMee33 profile image
JoyceyMee33

Thank you Helene for this info: I have spoken to my son this morning re my granddaughter having further tests. I hope she will be ok as she has just been inforded that she has passed her Msc degree and is hoping now to do her Phd. In America.

Thank you once again. Best Wishes Joyce

JoyceyMee33 profile image
JoyceyMee33

Re my reply. Sorry Helene I should have typed informed (not inforded)

J.F

jean48 profile image
jean48

I have hyper-mobility too. My Rheumy said there is a connection with this to connective tissue diseases,

My aunt has RA and hypermobility and has mentioned fibromyalgia too

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