Hi, my name is DestinMiller. I've been diagnosed with osteonecrosis. I am a 26-year-old female, that also has stickler syndrome type one. I am looking for other people that have this diagnosis. My doctor didn't tell me anything. Just that I have it, and it caused a piece of bone to break off, and that is why my knee is locked up.t
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I have an unknown genetic variant on genes COL9A1 (autosomal dominant multiple epiphyseal dysplasia and recessive stickler syndrome) and COL12A1 (affecting myopathic eds, Bethlehem myopathy, and Ullrich congenital muscular dystrophy) i understand if it sounds like interpreting my genetic test results but i wanna lay the other possibilities out, as i’m very confused and want guidance.
i read online it’s the rarest form of EDS discovered and named around 2016 and only 11 people known to have myopathic form. i have several hypermobile markers but surprisingly no facial, retinal, or hearing abnormalities and wonder if that means that it is eds and not the other congenital conditions.
Online it states myopathic eds improves with time, is that with an onset of symptoms at birth, childhood, or adulthood? i struggle with a wide range of connective tissue disorder related symptoms but mostly POTS extreme fatigue weakness and spinal instability, chronic degenerative disc as well. im only 19 and this started at 11 but the last 12 months let alone 4, have me terrified scared and worried every second of the day with the strange symptoms and feeling extremely alone in this battle with numerous specialists saying im fine or it’s psychosomatic.
Does anyone have any ideas or insight about what apparently is super rare form but i have questions about my own strange experiences.
Looking into getting seen at Indiana University Health Center for Ehlers-Danlos Syndromes...
(baltimore, MD)
Hi everyone, I have been struggling with fibromyalgia for 6 years now. I had these two lovely People who have helped me so much and I can not thank them enough for everything they have done for me more than my own family. I would like to request you all if you have Instagram or know any friends and family please follow these two and share their pagem that's all I can do for them for now as my way of thanks. Please ppl
Once again plz my online family you know what's its like to have fibro but it's rare to find ppl who don't judge u & support u. Help me say thank you for believing in my invisbale illness #fibromaylgia #chronicpian #Jointpain #SticklerSyndrome #Insomnia #brainhealth #Introvert #Instagram #Facebook #help
Hi everyone, I have been struggling with fibromyalgia for 6 years now. I had these two lovely People who have helped me so much and I can not thank them enough for everything they have done for me more than my own family. I would like to request you all if you have Instagram or know any friends and family please follow these two and share their pagem that's all I can do for them for now as my way of thanks. Please ppl
Once again plz my online family you know what's its like to have fibro but it's rare to find ppl who don't judge u & support u. Help me say thank you for believing in my invisbale illness #fibromaylgia #chronicpian #Jointpain #SticklerSyndrome #Insomnia #brainhealth #Introvert #Instagram #Facebook #help
So happy I found this group! I thought I would share the #fingerpainting I’m currently working on. This is basically the base/planning layer. I was testing color schemes and stuff to see how it may look when I’m done. It’s a really personal piece so I hope it turns out well in the end. I started finger painting about 8 years after finding that’s I couldn’t hold a brush very well anymore due to the degenerative connective tissue disorder I have, Stickler Syndrome. I actually much prefer to paint with my fingers now. Someday when I’m good enough I would like to be able to teach other people, especially those who want to paint but struggle to hold and use paint brushes, how to finger paint. #adaptiveart #fingerpainting #Fibromyalgia #SticklerSyndromePierreRobinSticklerSyndrome
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