@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 1-) Oh! I'm there, in that spot, just about 2 years ago, I was able to touch both hands flat on the floor, with my knees straight. I haven't stretched in all of that time, & now, even though I am only about 2" away from it, while still keeping my knees straight, he dismissed...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 2-) ...the idea of EDS almost immediately. I believe I was 50, at that time, when I decided to get serious about wanting help. Now I've just turned 51, & I hurt EVERY DAY! He said go have your kids diagnosed, & then let me know what happens. Meanwhile, I have been taking...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 3-) ...Diclofenac pills for my shoulder problems, but they also seem to help my hips a little, & I think they take the edge off of the pain in my feet a little. I mean that & two acetaminophen tablets make it it slightly more bearable, enough that I get out of bed. I know...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 4-) ...the wait is long for a diagnosis, & I now feel my doctor has abandoned me! He hasn't come up with ANY OTHER EXPLANATION of WHY I am having multiple issues with my joints, why I was diagnosed with Carpal Tunnel Syndrome years ago with pain terrible enough that I was...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 5-) ...willing to have surgery on both arms, but my Nerve Conduction Study Test were minimal, (I now know that's typical with EDS), yet even though my test were minimal, my Doctor (of Neurosurgery), was willing to do the surgery to try & help relieve my pain. I was scared...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 6-) ...though, I was only 20 years old! Finally my "CTS" pain subsided to the point I postponed the idea of surgery. However my shoulders apparently suffered nerve damage which is now more bothersome than the "CTS" pain. I also had Plantar Fasciitis, a few years later, in...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 7-) ...which I did have the need for surgery, which was done on both feet. It has been 2-3 years ago now, since my hips started hurting. I even got frozen in place, at a store, & also needed help to my car a few times. Now my hips mainly just hurt pretty bad. I also began...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 8-) ...having shoulder pain, which I believe the 'new' shoulder pain started in 2020, or 2021. Long story short for my shoulders; I now see a Chiropractor that helps. I need to be accesed intensely for EDS for the above reasons, & a few more, when combined with the fact that...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 9-) ...my kids have so many symptoms, & it seems very apparent that I gave them EDS, even though perhaps my case has been milder, especially when comparing our childhood(s). However, they undoubtedly at minimal, got some of this from me! My 1 child who whose genetic test...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 10-) ...came back showing 1 mutated copy of the COL12a1 gene, has extra symptoms when compared with two of the siblings that don't have that mutation. I looked it up, it says two copies equal #MyopathicEDS. However 1 copy can still cause milder symptoms, which seems to be the...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 11-) ...case in my family. Also when I looked it up. Ichthyosis (my apparent skin condition), popped right up underneath as an associated condition!
I felt better as a child, except my feet did hurt often, especially in places like the mall. My parents kept me busy though,...
I felt better as a child, except my feet did hurt often, especially in places like the mall. My parents kept me busy though,...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 12-) ...which I attribute to helping to keep me strong as a child. Now though, I have all of the symptoms that I mentioned above, plus I also had Placenta Abruption with my first child, & after 7 months of pregnancy, he lived only 2 hours. There were many problems internally,...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 13-) ...& also limb defects. It was a devastating loss. I still need answers for what happened. After realizing EDS could have been the cause, I tried ordering the birth records. I have struggled to get them lately because of CV, & because, I also have been busy with trying...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 14-) ...to get my kids diagnosed, with at least getting them started with genetic testing, so I haven't gotten back around to calling them again, for the 4th,or 5th time, because they haven't been answering their phone lately anyway! ...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 15-) ...So now I at least accomplished getting genetic test for 3 of my children. So far only 1 has the 1 copy of the COL12a1 gene, (and more symptoms than the two that were tested, as mentioned above), so their doc assumes only hEDS for the other two without the COL12a1 gene,...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 16-) ...but also for the child with the 1 copy of the mutated #COL12a1 gene. From my research, I believe that child still has extra symptoms from that mutation; Later walking than the other 3 children, thumb contractures, & Sclera that is more blue, like mine. Perhaps there...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 17-) ...are other differences as well. I still have one child that has not been tested yet, because of not living with me, due to being the oldest, & being married. Hopefully I will find out much more in the future, after the hEDS paper is released, & we have more testing...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 18-) ...Hopefully by my writing all of this out, maybe it could help someone understand their own family's EDS a little better, or perhaps it could help someone researching EDS, to connect a few more dots. One thing researchers need to understand is that we need more doctors...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 19-) ..specializing in EDS, who understand it in depth, so that patients aren't dismissed so lightly! They all need to understand that some types of EDS can actually cause stiffness, such as type(s) in which the patient is carrying the COL12a1 gene mutation. However it also...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 20-) ...seems from articles that I have read, that perhaps other mutations can cause stiffness as well, & it is very apparent, that even hEDS can have stiffness when combined with other mutations! I am quite certain that with the comorbidities that my children, & myself have...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 21-)...that when the hEDS paper is released we will have the confirmation that we need for hEDS, & hopefully more answers for treatment as well! Thank you to all the people who are doing the research! Thank you @CortDoesScience
I don't know all of the researchers names yet,...
I don't know all of the researchers names yet,...
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk 22-) ...but thank you ALL so very much @NorrisLab & @ResearchMUSC for doing the MUCH needed research for EDS / hEDS !!!
@lunettaporchett @EstherAcosta126 @AHinkle628 @DrEReinhold @DenzAllie @CortDoesScience @BluesteinLinda @ehlersdanlosuk @NorrisLab @ResearchMUSC @D2Unroll
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