Help

[Purpleprincess12]

Hi, just joined the forum. My daughter is 17 and has recently been diagnosed with hypermobility

As a baby I remember her shoulders subluxing and her screaming until the doctor helped. Then at about 7 she had problems with tight calf muscles. At about 10 she developed bunions on both feed and required insoles and special wide fit shoes

The doctor said the bunions were due to the tight calf muscles. Her joints - shoulders, knees and back sublux about twice a week now. She has exercises to strengthen her joints and attends a private physio for manipulations twice a month.

She saw a rheumatologist about 4 years ago who thought she had some hypermobility symptoms eg she can bend her thumbs back and can over stretch to extremes. I'm confused what to do? Of note is my daughter a lazy eye but can shut one eye off and move by her other eye to see things. I'd really like advice abd to talk to you someone. Thank you

[Jay66]

Hi. If you need to talk to someone about hEDS, the facebook forum facebook.com/groups/1451508... can give more of a conversation. The best thing you can both do is to get lots of knowledge about the condition, as there are lots and lots of comorbidities - conditions which you often get with hEDS. This website is very good though it doesn't have all the information: edhs.info/home

Lots of people say the book it sells too is very good as a general overview of information about the condition.

[cyberbarn]

for her eyes have you seen a behavioural optometrist? They can give exercises that can help with eye problems such as tracking and focusing that normal high street opticians often can't. You can find registered behavioural optometrists here: babo.co.uk

[Saassii]

One day at a time Mama xxx

[Anne2018]

As I’ve had similar problems with my son, I totally understand how you feel.

What others have said here about reading up on hypermobility and EDS is very helpful, I then went with my son to his GP with a list of all of the symptoms.

We went round the system for a few years having MRI’s and various tests and saw a few rheumatologists, although hypermobility was mentioned we never seem to get past it.

Recently we went to see a specialist and he was diagnosed.

One day at a time I guess otherwise it can consume you but get your daughter to list down all her symptoms even if they don’t seem to relate.

Forums are good as you can see how other people deal with the everyday issues

Good luck