30 May 2019
Exactly! I always say that the glue that holds me together is loose. Sometimes I have to bring it down to a little bit more simple level just so people can picture it. Your description is great! #DysSupportChat
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30 May 2019
T5: First it was figuring out which side of the family I had even gotten my #EDS from and it actually looks like there are signatures on both sides. My geneticist actually told me that I had to have conversations with everyone in my family to encourage testing! #DysSupportChat
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30 May 2019
It’s so easy to get overwhelmed, when we already have more that our share of other diagnoses. We have to find strategies to cope and learn the new-normal. Once you realize that your really have lived with it your entire life, puzzle pieces fit together #DysSupportChat
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30 May 2019
T4: I wish I would have known how fragile my body was. I thought I knew— this year has proven me wrong. We were in a car wreck in January. Prior to that I had no bulging discs anywhere. Now I have 4 bulging disks and also have a probable major tear in my shoulder #DysSupportChat
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30 May 2019
#DysSupportChat. Yes this is key! Sometimes it can be overwhelming, but it is important to take it one step at a time and continue to educate and empower yourself while helping your body.
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30 May 2019
#DysSupportChat I love that you use a symptom diary. It was so helpful for me when dealing with my migraines and other symptoms to be able to track patterns, and see what interventions helped the best. Sometimes it was hard to remember to do it, but it was very helpful!
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30 May 2019
A symptom diary can be your best friend because it will start to show trends. I keep one and take it with me to doctor appointments. With my #Dysautonomia and #EDS along with others, I don’t necessarily recognize a new symptom even! #DysSupportChat
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30 May 2019
Replying to #DysSupportChat Do not get overwhelmed by the diagnosis. Remember you were born with this and have been living with it your whole life. Having a name for it validates your experience but does not give it power.
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30 May 2019
#DysSupportChat I have had to start strength training to work on allowing my body to have better support with my joints. I also rest when I need to rest. I have had to also use braces to help provide more support at various times.
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30 May 2019
#DysSupportChat I have found that as well, once you list off three chronic conditions that are not CHF, Diabetes, or arthritis some providers are hesitant to help or do not truly get an understanding of the complexity of care.
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30 May 2019
T2: Hmm...definitely educate yourself. Make sure you have a medical team that understands #EhlersDanlosSyndrome and that they can provide the best care for you! After all, we, as patients are the priority! #DysSupportChat
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30 May 2019
#DysSupportChat Also do not be afraid to speak up about what is going on with your body. The providers cannot help you if you are not honest with how you are feeling and what is going on.
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30 May 2019
#DysSupportChat Be your own advocate. I also would encourage working on strengthening and exercising appropriately. FInd someone who can tailor an exercise program for your unique needs and based on where you are at the moment.
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30 May 2019
#DysSupportChat I think it would have to be the importance of finding a strong support system and medical team. Making sure they are knowledgeable, or at least willing to learn, and know when they are out of their depths. Having the support is huge. Also get educated.
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30 May 2019
#DysSupportChat There is definitely a connection, we just have to keep digging. I am excited to see what the future holds as far as diagnosis and treatment! We are making waves!
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30 May 2019
#DysSupportChat I am finding that we are making headway in the awareness front. When I have explained that I am hypermoble some have actually known about EDS, though they usually leave off the 's' and let me know I have ED.
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30 May 2019
T1: #DysSupportChat Be ready with an explanation about my hypermobility, dislocations, subluxations, etc. wear anything zebra and explain about it. proclamations, walks, doctor education.
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30 May 2019
Welcome! We are glad to have you. You have the trifecta of diagnosis: hEDS, dysautonomia, and MCAS! #DysSupportChat
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30 May 2019
I’m Kim! I’m from Wisconsin. I received my #EhlersDanlosSyndrome diagnosis in October although my neurologist had suspected it prior to that. I’ll be in and out today with the chat :) #DysSupportChat
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