Great video. I noticed you have a unicorn in the background. My daughter has EDS #3 also among other things! I call her my unicorn. She has a lot of doctors appointments and specialists. It seams with each appointment she's diagnosed with something new.
Thank you! I do indeed - I love unicorns :) Sorry to hear your daughter also has EDS and has lots of appointments. I can really relate and I totally know what you mean about being diagnosed with something new at every appointment! Please send her my love xx
Thank you Grace :) That's great that you're hoping to raise awareness on your channel too. Are you a member of EDS UK? If not, I would really recommend them - so much useful information and support xx
I'm not a member yet but I follow them on social media. I'm pretty lucky to have a GP as a dad and my consultant will take emails from me all year round but if I get stuck, I'll definitely bear EDS UK in mind :) xx
Just out of interest, do you do any sports or activities other than the physio? I know some people do things like swimming as its non-impact. Also have your symptoms always been this bad or have they got progressively worse over time? I'm 20 and haven't been diagnosed yet but I show a lot of the symptoms and have been trying to get doctors appointments. I'm really into sports but I'm worried I'm only making my joints worse, they have already got a lot more painful in the last 2 or 3 years. Any help would be useful! Also great video, very informative :)
Thank you Gemma - I'm so glad you found my video helpful :) I don't currently do any other sports/exercise other than my physio. When I was younger I did a lot of dancing, some of which probably didn't help matters! But at the time I didn't know I had EDS. I did try swimming a few years ago (after doing hydrotherapy with my physio department). I found it more difficult than the hydro, as the pool wasn't very warm and not really suitable for doing gentle exercises. However, I have been recommended by my doctors that things like swimming and Pilates are good for people with EDS, as long as they are carefully suited to your abilities. My symptoms have definitely got progressively worse as the years have gone on, although I had noticeable issues from birth, so it's a bit of a mixture. Overall though, I've become more unwell as I've got older. I would definitely recommend chatting to your doctor about your concerns so you can be referred to the right people for testing. With regards to you doing a lot of sport - try not to worry too much at the moment. If specific things are causing you pain, perhaps try not to do those, but exercise can be helpful in that it strengthens the muscles around the joints, which can help them to be more stable. But it does have to be the right kinds of exercise, so when you see your doctor it might be worth asking to see a physio. They will be able to advise you more on which sports are good/not so good for the problems you are experiencing. Sorry that's so long! I hope it's helped a bit. If there are any other videos you would find helpful around EDS/Health or just anything else, I would love to hear your ideas and would be more than happy to give them a go :) xx
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Great video. I noticed you have a unicorn in the background. My daughter has EDS #3 also among other things! I call her my unicorn. She has a lot of doctors appointments and specialists. It seams with each appointment she's diagnosed with something new.
Thank you! I do indeed - I love unicorns :) Sorry to hear your daughter also has EDS and has lots of appointments. I can really relate and I totally know what you mean about being diagnosed with something new at every appointment! Please send her my love xx
great explanation :) thanks
That's OK - I'm glad you found it helpful :)
Really great video :) I was diagnosed with type 3 EDS like a year ago and I'm going to try and spread some awareness through my channel too :)
Thank you Grace :) That's great that you're hoping to raise awareness on your channel too. Are you a member of EDS UK? If not, I would really recommend them - so much useful information and support xx
I'm not a member yet but I follow them on social media. I'm pretty lucky to have a GP as a dad and my consultant will take emails from me all year round but if I get stuck, I'll definitely bear EDS UK in mind :) xx
Ah that's good. I'd definitely recommend them xx
Just out of interest, do you do any sports or activities other than the physio? I know some people do things like swimming as its non-impact. Also have your symptoms always been this bad or have they got progressively worse over time? I'm 20 and haven't been diagnosed yet but I show a lot of the symptoms and have been trying to get doctors appointments. I'm really into sports but I'm worried I'm only making my joints worse, they have already got a lot more painful in the last 2 or 3 years. Any help would be useful! Also great video, very informative :)
Thank you Gemma - I'm so glad you found my video helpful :) I don't currently do any other sports/exercise other than my physio. When I was younger I did a lot of dancing, some of which probably didn't help matters! But at the time I didn't know I had EDS. I did try swimming a few years ago (after doing hydrotherapy with my physio department). I found it more difficult than the hydro, as the pool wasn't very warm and not really suitable for doing gentle exercises. However, I have been recommended by my doctors that things like swimming and Pilates are good for people with EDS, as long as they are carefully suited to your abilities.
My symptoms have definitely got progressively worse as the years have gone on, although I had noticeable issues from birth, so it's a bit of a mixture. Overall though, I've become more unwell as I've got older.
I would definitely recommend chatting to your doctor about your concerns so you can be referred to the right people for testing. With regards to you doing a lot of sport - try not to worry too much at the moment. If specific things are causing you pain, perhaps try not to do those, but exercise can be helpful in that it strengthens the muscles around the joints, which can help them to be more stable. But it does have to be the right kinds of exercise, so when you see your doctor it might be worth asking to see a physio. They will be able to advise you more on which sports are good/not so good for the problems you are experiencing. Sorry that's so long! I hope it's helped a bit. If there are any other videos you would find helpful around EDS/Health or just anything else, I would love to hear your ideas and would be more than happy to give them a go :) xx
i love your unicorn :)
Ah thank you!
:)