@TheEDSociety 1-) My hEDS child standing on my legs. I don't know if I have hEDS, because I am not that flexible. One of my children has 1 mutated COL12a1 gene. I am convinced that I passed that type... @TheEDSociety 2-) ...because when I looked up the gene, it is associated with my skin condition called Ichthyosis. It also says that the COL12a1 gene causes Myopathic EDS when there are two copies, but 1/2 of the mutation, (1 copy of the COL12a1 mutation) does still cause problems, so I...
Feb 28 • 4 tweets • 2 min read
@Ehlersdanlos 1-) A-) When Parents don't have much Hypermobility, but have Lordosis, or Scolosis, hip pain, shoulder pain (likely shoulder subluxations) & and a few other symptoms.
B-) When a child with EDS has speech problems, (a symptom)?
C-) A list of doctors who diagnose.
@Ehlersdanlos 2-) A-) Can EDS or hEDS writing problems, be misdiagnosed as a Dysgraphia problem independent of EDS?
B-) Can an hEDS or EDS problem be misdiagnosed as a Dyspraxia problem independent of EDS?
@DrEReinhold Thank you for retweeting! I really want to help others, by spreading the word with the help of anyone who reads this to: the medical community, to people who have EDS, (but need more understanding of it), & to the families, friends, co-workers, & acquaintances of anyone with EDS.
@DrEReinhold 2-) ...& of course my children need help, as well as myself. You can see my one child's finger bent all the way back in the photo. I don't encourage this normally, but my child wanted the picture to be my profile pic. to help with my cause, as stated in the above tweet. The...
@TheEDSociety 1-) Thank you for your response. I am guessing you may already know the wait to see a geneticist for hEDS is very long. Also it doesn't seem from everyone that I have spoken to, that even when you have lots of symptoms, that a diagnosis is forthcoming. My children can bend...
@TheEDSociety 2-) ...their fingers & toes completely back to the back(s) of their hands. One's shoulders pull out even when just carrying a few bags. At least two of them can put their ankles completely behind their head, & the others almost can do it.
Dec 18, 2021 • 6 tweets • 3 min read
@TheEDSociety 1-) Could my family be enrolled? We have at least 5 of us with symptoms, & have ruled out other types for 3 of us. One family member has the COL12a1 gene. This family member has contractures of the thumbs. Another has dislocating shoulders. Two have Chronic Acid Reflux,...
@TheEDSociety 2-) One has Scoliosis. We all have Piezogenic Papules. At least 3 of us have perfume allergies. I had Placenta Abruption. Several of us have slight Ichthyosis, which was mentioned when I looked up the COL12a1 gene. I have had Bilateral Foot Surgery for Plantar Facitus,...