Looking for Information on GP and Ehlers Danilo’s Syndrome

Always_Napping

473d

Do any of y’all have GP and Ehlers Danilo’s syndrome? I haven’t gotten tested for it cause my doctor is focusing on bringing inflammation down, but if I were to have it could you tell by looking at blood work and deficiencies? Ive always had shoulder back and hip problems where the catch, pop, or even move out of place. But lately since my diagnosis of GP my right shoulder constantly is out of place. My blood work shows extremely low MCHC, Iron, Vitamin D, extremely high WBC, and high inflammation markers. I would love more information on EDS and GP just wanting to know for educational purposes I’m not about to self diagnose.

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    • GlitterZebra

      473d

      @Always_Napping no problem! EDS is a spectrum, so it’s possible for some to have a very mild form of it and never know. I’ve heard quite often of one family member getting diagnosed, and others realized they had similar symptoms and getting diagnosed as well. It happened to me too! I was actually the first to get diagnosed in my biological family, and then we realized my birth mother, and grandmother had it as well, but not as severe/exacerbated. But it is possible to be the first in your family to get it, so just because there’s no family history of EDS doesn’t disqualify you! I will say those with EDS are more prone to aneurism (if you have vascular type). It’s also not uncommon for joints to start ‘randomly’ acting up with EDS. Physical therapy is super helpful in increasing the stability of the joint, and minimizing dislocations. Bracing is also effective with the right brace for you! I’ll keep my fingers crossed you get some answers soon!

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    • GlitterZebra

      473d

      I have EDS and GP. You can’t tell if you have EDS from bloodwork. It must be done clinically (with the Beighton scale) and medical history or with genetic testing for one of the more rare types (there’s 14 actually) but the most common is Hypermobility EDS (which doesn’t have a published genetic marker) . The Ehlers Danlos Society has a bunch of great information on diagnosing and what to do. Seeing a geneticist (if possible) is the biggest specialty to diagnose definitively, as most other doctors I’ve encountered in other specialty’s (rheum, ortho) are hesitant to diagnose because they have so little knowledge on it. You should also know that GP and EDS are co-morbid conditions, so them together isn’t super uncommon. Hope this helps 💕

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      • Always_Napping

        473d

        @GlitterZebra thank you for the information. I was diagnosed with GP in February and just last week started treatment. So I’ve been doing a lot of research and watching GP channels on YouTube. And a majority of the women I watch on YouTube all have EDS. I’ve always had cracky joints and I can dislocate my hips to pop them and relieve tension in my hips and back. But out of no where my shoulder has started popping out of place and it’s almost like I got stabbed in the shoulder and the only way to pop it back is if I use a wall and straighten my arm and put some body weight behind jt. I’ll definitely talk to my doc about it and seeing if we can test for it. The only thing is I don’t think anyone in my family has muscular skeletal issues, but there’s a lot of heart problems and aneurysms on the mens side of my family. So far out of everyone in my family, I’m the first to have any GI issues and overall chronic health issues. Thanks for your reply though! 💚

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        • GlitterZebra

          473d

          @Always_Napping no problem! EDS is a spectrum, so it’s possible for some to have a very mild form of it and never know. I’ve heard quite often of one family member getting diagnosed, and others realized they had similar symptoms and getting diagnosed as well. It happened to me too! I was actually the first to get diagnosed in my biological family, and then we realized my birth mother, and grandmother had it as well, but not as severe/exacerbated. But it is possible to be the first in your family to get it, so just because there’s no family history of EDS doesn’t disqualify you! I will say those with EDS are more prone to aneurism (if you have vascular type). It’s also not uncommon for joints to start ‘randomly’ acting up with EDS. Physical therapy is super helpful in increasing the stability of the joint, and minimizing dislocations. Bracing is also effective with the right brace for you! I’ll keep my fingers crossed you get some answers soon!

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☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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