hEDS vs HSD: Controversies in Diagnosis with Alan Hakim, MD

[@AudreyKershaw-s6b]

Hi Linda. We have messaged before. I am an Oral Surgeon in Scotland. I am in awe of what you do to spread the message of EDS/HSD. Thankyou for this podcast. Alan was great as he always is! Sending you my best wishes.

[@bendybodiespodcast]

Aww.... thank you so very much!!! It is so great to hear from you and I greatly appreciate your support!!

[@NA-cy5tc]

Thanks a lot for the Interview! I was very interested to hear Dr. Hakim mention muscle weakness, because that is something I struggle with a lot and seem not to have found an appropriate way to deal with it, as it increases year on year. So it would be a very interesting topic for me to hear more about in any future Episode: how does it relate to hEDS/HSD? Is it commomly observed? Are there any recommendations how to approach? Thank you so much for your work ❤

[@bendybodiespodcast]

Thank you for that helpful feedback. I agree with you that it would be important to discuss this in the future especially since "muscle weakness" means different things to different people. Having a much more detailed discussion is a terrific idea!

[@triciachampine5807]

I also fight muscle weekness. Sometimes through movement I gain ground. Sometimes through inactivity I lose ground. I just keep going super slow in the right direction. Physical therapy wants me to do like 10 reps, for example. I start at 2. Then next week 3. And so on. I refuse to let the therapist bully or shame me into going fasting than I'm able. It's not worth it. But I don't let them stop me from going forward

[@SETGL2010]

This helped me feel much better about my decision to hold off on genetic testing and proceed with clinical diagnosis of hEDS.

[@bendybodiespodcast]

I am so glad you found the episode helpful. Have you listened to any others?

[@SETGL2010]

@@bendybodiespodcast Yes. I’ve listened to a few and subscribed. I’ve found them very helpful!

[@kajnor1814]

What an amazing intervue! Thank you Linda Bluestein, and thank you Alan Hakim! 💕

[@bendybodiespodcast]

You are most welcome. What did you find most helpful?

[@kajnor1814]

@@bendybodiespodcast Him explaining like he did about the criteria, the why's, the considerations. From one who has written the criterias. And yes there was more. I sort of know some, read about, follow the research, but this verbal discussion added "meat to the bones" so to speak.

[@bendybodiespodcast]

@@kajnor1814 I feel the same way, thank you!!!!

[@colleenbarham6567]

Wonderful ❤

[@bendybodiespodcast]

I am so glad you liked this episode. Did you have a favorite part? Have you found other Bendy Bodies podcast episodes helpful?

[@KxNOxUTA]

Oooh "subluxation" interesting! I have this thing that when I lay down and my silly ADHD brain AGAIN forgets that we're a mess, then I might attempt to get up from side position by rolling over my knee. And then you'll see me flop back into bed or the exam table mid motion, cause I can feel my knee starting to dislocate. And by flopping down and removing all strain on the joint, it snaps back. It's a very disgusting type of sharp pain. And one I've flopped back down, there's just the very light dull pain of the tissue around and tenderness for the rest of the day. Also that joint will be more unstable and more prone to accidents for the day, but it's all well after a good night sleep. I've trained myself to not use my knees in that way any more when getting out of bed or down exam tables, but what can one do with a silly brain that is impulsively stuck on something else and throws all caution to the wind now n then. :'D I'm in Germany and really would love to get assessed for this host of constant wandering "construction site" pain in my body. XD But it's hard to even find out where to start. Went to GP to ask where to go n we got stuck on having to fix a little instance of Vitamin D insufficiency. And he looked for some other basic stuff first. I'm bucklig up for a looooooooong way to maybe finding out anything 🥲

[@bendybodiespodcast]

Please keep following and listening to the podcast as there is a lot happening now in this space. I have already shared lots of tips for improving quality of life, but there will be a lot more to come as new studies are rolling in.

[@KxNOxUTA]

Thank you very much for taking the time to educate us! 💁‍♀❤‍🩹

[@bendybodiespodcast]

You are most welcome. Have you found any other videos helpful?

[@KxNOxUTA]

@@bendybodiespodcast It would be easier to ask me what videos I have NOT found helpful yet. And the answer is, from all those I have watch, not a single one was unhelpful. They're all packed with helpful information I had no idea I needed. I spoke to my GP yesterday once more. When I managed to word a portion of what I experience as my physical "norm", I saw by his expression, that all these "normal daily struggles" of mine, are not sounding normal to him. 😂 I'm 35, it took me this long to merely figure out that my daily experience of my body is not just "a bit different" but like .... "a lot". 🙃 Thank you for helping me, by speaking about struggles of people within this community. You make the invisible parts of our lives very visible.