I have HSD and not HEDS. My Dr said I have all of the symptoms, but because I have several autoimmune disorders it rules out and HeDS diagnosis according to the diagnostic criteria on the EDS webpage. My symptoms have gotten severe over the past 6-7 years where I have been through menopause and experienced extreme trauma in my life. I now wear a knee and foot brace. I need to purchase finger splints because I can’t press buttons on certain things anymore due to pain from hyper mobility. I appreciate you sharing your experience and advice. Maybe say a few thing about Hyper mobile spectrum disorder because I have been just as affected as someone with true EDS.
Many experts believe HSD and hEDS are the same thing! Hopefully, when the gene/s are finally discovered, we will all have a singular diagnosis and the genetic data to prove it! If you want a more affordable option than metal finger splints, there are great plastic options on Amazon that I've purchased recently.
I feel the same, I am about to be evaluated for if I Have EDS Because I have issues needed to have EDS & I can't walk for very long time anymore & I am 25. I always second guessed if it was possible for me to have EDS Because my joints have not fully dislocated even though they are unstable. So I feel validated form this video because many others with EDS Are impacted more than I would be
I have POTS, some gastrointestinal problems and migraines. I have bad scarring, TMJ and am overly flexible. However I don't have any joint dislocations. The genetic specialist said that I probably have EDS but refused to diagnose me because there is no cure. So I am not diagnosed.
That's too bad about your geneticist. There are loads of diseases out there with no cure, but most have treatment options, EDS included. Having a name for your disease matters, especially when seeking treatment.
Mast Cell Activation Syndrome (MCAS) or Hereditary alpha-tryptasemia syndrome (HαTS) or worst the rare Systemic mastocytosis (SM). All mast cell diseases linked to hEDS and Autism Spectrum Disorder (ASD). Scientific articles: • Association of mast-cell-related conditions with hypermobile syndromes: a review of the literature • Mechanobiology in the Comorbidities of Ehlers Danlos Syndrome • Mast Cells, Stress, Fear and Autism Spectrum Disorder • The mast cells - Cytokines axis in Autism Spectrum Disorder • Autism Spectrum Disorders and Mastocytosis
I have mild hEDS because I have some looseness with joints and muscular joint issues but I also have severe MCAS and POTS. The geneticist diagnosed with hEDS due to my severity of MCAS and my Brighton score.
I’m just getting started, tomorrow is my first appointment with a geneticist. My family Dr was quite surprised that I had so many red flags that I put together.
This is the video I NEEDED! I keep gaslighting myself into thinking I’m not sick enough to have HEDS
I have HSD and not HEDS. My Dr said I have all of the symptoms, but because I have several autoimmune disorders it rules out and HeDS diagnosis according to the diagnostic criteria on the EDS webpage. My symptoms have gotten severe over the past 6-7 years where I have been through menopause and experienced extreme trauma in my life. I now wear a knee and foot brace. I need to purchase finger splints because I can’t press buttons on certain things anymore due to pain from hyper mobility. I appreciate you sharing your experience and advice. Maybe say a few thing about Hyper mobile spectrum disorder because I have been just as affected as someone with true EDS.
Many experts believe HSD and hEDS are the same thing! Hopefully, when the gene/s are finally discovered, we will all have a singular diagnosis and the genetic data to prove it! If you want a more affordable option than metal finger splints, there are great plastic options on Amazon that I've purchased recently.
Autoimmune can come with heds my mum had severe ms so why did they say that to you totaly incorrect
This makes so much sense, really clarifies something I’ve been unsure of and I feel so validated.
I'm glad it was helpful!
I feel the same, I am about to be evaluated for if I Have EDS Because I have issues needed to have EDS & I can't walk for very long time anymore & I am 25. I always second guessed if it was possible for me to have EDS Because my joints have not fully dislocated even though they are unstable. So I feel validated form this video because many others with EDS Are impacted more than I would be
@@jwilleseries7764 I hope your evaluation goes well!
I have POTS, some gastrointestinal problems and migraines. I have bad scarring, TMJ and am overly flexible. However I don't have any joint dislocations.
The genetic specialist said that I probably have EDS but refused to diagnose me because there is no cure. So I am not diagnosed.
That's too bad about your geneticist. There are loads of diseases out there with no cure, but most have treatment options, EDS included. Having a name for your disease matters, especially when seeking treatment.
@@ehlersdanlosandi I am diagnosed with POTS at least. If my other EDS symptoms get worse I will fight for the diagnosis.
@@ehlersdanlosandi So, according to your geneticist, treatments don't matter if there is no "cure". Amazing.
@@Catlily5what pain do you have seen you on lots of channels do you have fybromyalgia symptoms
@@Truerealism747 I don't think I have fibromyalgia. My main pain is migraines, then gastrointestinal, then achy muscles, then nerve pain.
Very similar to autism in regards to being on a spectrum
Mast Cell Activation Syndrome (MCAS) or Hereditary alpha-tryptasemia syndrome (HαTS) or worst the rare Systemic mastocytosis (SM).
All mast cell diseases linked to hEDS and Autism Spectrum Disorder (ASD).
Scientific articles:
• Association of mast-cell-related conditions with hypermobile syndromes: a review of the literature
• Mechanobiology in the Comorbidities of Ehlers Danlos Syndrome
• Mast Cells, Stress, Fear and Autism Spectrum Disorder
• The mast cells - Cytokines axis in Autism Spectrum Disorder
• Autism Spectrum Disorders and Mastocytosis
Thank you so much for this! I start to do somersaults in my head over this quite often, which is very frustrating.
You are very welcome!
I have mild hEDS because I have some looseness with joints and muscular joint issues but I also have severe MCAS and POTS.
The geneticist diagnosed with hEDS due to my severity of MCAS and my Brighton score.
Thank u for sharing ❤
@TheMrsShawn You're welcome, thank you for watching!
I’m just getting started, tomorrow is my first appointment with a geneticist. My family Dr was quite surprised that I had so many red flags that I put together.
Good luck with your appointment!
People can have a mild case of cEDS, where as I would have a moderate case and someone else could have a severe case of cEDS.