Thank you for the posting. It reminds me that we’re not alone. We are currently going through a very debilitating case related to EDS. We are hanging in there for proper treatment. Please pray for us. Thank you 🙏
I think we are as well! Diagnosed with so many things (and does it did have) like mold toxicity, bordatella, Babesia, TBIs, and meningoencephalitis. He now at 36, has a LOT of these issues!!! I don’t know who treats this in Michgan. 🙏🙏
Please get more Doctor's in North Carolina to join in . We sure could use more support in this state. Concerned parent!!!! I have to travel outside my state just to receive prolotherapy.
I'm in my 20's and have seen tons of doctors, had surgeries and go to the chiropractor. And I've only been able to truly know what was wrong with me this past year. It's been a struggle to have a doctor actually know anything about EDS or my POTS. Your community and professionals in this society has been an inspiration and has given me hope. Thank you.
Support in the form of information for family and friends of ppl with EDS would be helpful. Without that support many families fall apart leaving the EDS sufferer more isolated than ever. Coping with EDS is bad enough. Losing your partner and children because of lack of support is depressing. GPs and medical Specialists need to know the phrase "If you can't connect the issues, think Connective Tissues". Sometimes a simple Beighton Test taking 1 minute can stop the decades of negative investigations which are usually blamed on patient being "difficult" or "won't take advice" when offered unsuitable treatment. Swimming can help however many ppl with EDS have circulation issues so require temperature to be a few degrees higher. Hydrotherapy helps but 6 sessions a year doesn't. Some hospitals have pools for treatment of hip replacements, etc. I'm sure I'm not the only one who would pay to use those pools when not in use by other patients. Many of the musculoskeletal issues can't be seen on horizontal scans because of the effect of gravity, however despite mounting evidence that upright/dynamic imaging is required our only option is to pay thousands of ££s for private scans because they are incredibly rare on NHS. How many ppl, no longer able to work because of decades of misdiagnosis or lack of treatment, can afford private consultations? No GP should have preconceived ideas based on previous GP's mistakes. At age 50 I was finally diagnosed. At last I had the answer. Now things would improve. Just shows how wrong I was.. It took a further 11 years for dysautonomia, dysmotility, Mast Cell Activation Syndrome (despite all the symptoms being already in medical records for decades), Gerd, and so on to be diagnosed. But these are common comorbidities of EDS. How can GPs be so blinkered when a simple Google search can give the information they need? When did medicine start sending ppl with multi-systemic conditions to lots of different consultants causing confusion and conflicting treatment and medication? If someone has 'flu they wouldn't send them to 10 different specialist Consultants. So why do it with EDS. Yes, sometimes a few different Specialists may need to be consulted, however multi-systemic conditions are better treated by a Specialist in the condition. The same applies to the comorbidities. For instance the multi-systemic nature of MCAS requires 1 department to lead, making decisions about who else should be consulted and arranging treatment. Instead it's left to the patient to find someone in their area who has the necessary expertise to understand the condition. The patient then has to hope their GP can get them a referral. These referrals are usually rejected due to NICE guidelines or not possible because 99% of Specialists for MCAS are private. So the patient gets more frustrated as does the GP. On top of all this, Specialists in EDS are part of Rheumatology so have to see many other people with different issues. It's small wonder that those with necessary expertise leave NHS for private practice. A cost analysis would show that a couple of hours with a private Specialist would be far more cost effective than decades (or even a single financial year) of different NHS departments. That's just false economy. Many ppl with EDS would have been able to continue working longer and needed less hospital treatment (whether as outpatient or through A&E) if the diagnosis had been reached sooner. At my GP practice I'm now usually passed to 1 GP because she has ANOTHER patient with MCAS. There are probably many more out of 40,000 patients who haven't been identified yet. So now this GP has the added pressure of trying to learn about hEDS and MCAS as well as trying to treat all her other patients. No pressure there then! On top of that the treatment guidelines continually stop referrals because NICE still consider MCAS to cause elevated tryptase levels. It does SOMETIMES. In over 70% of cases there is no tryptase level increase. Mast Cells are responsible for 1000s of different chemicals being released in varying amounts, to different triggers. Sometimes they overreact. Sometimes the overreaction is of short duration and can be dangerous (e.g anaphylaxia). Sometimes it can be continuous in response to food, airborne pathogens, insect bites, etc. We just don't know. What we do know is that EDS is far more than just a simple Connective Tissue Disorder. There is more information on "EDS and it's Fellow Traveller MAST CELL ACTIVATION Syndrome" by Anne Maitland (available on RUclips.
My gastroenterologist specializes in us. He has Heds. He said 3% of the population has eds. Not 1 in 5,000. He wants the diagnosis of this disease to become so common that it is part of any medical exam.
I'm full of hope knowing that there is research. I'm wondering if there is literature about the frequent comorbidity with ASD (autism, asperger..) it seems there are some links. Sometimes i'm feeling very lonely, doctors don't know what EDS is, so it's easy to forget that there are a lot of things going on all over the world. Thank you.
I have EDS and no it’s not easy but I’m going to keep on counting my blessings.# Zebra strong! I am praying for EVERYONE that has EDS! May God guide the scientists’s hands and they come up with a cure! Lord, please hear our prayers! Thanks to my Neurologist he was able to diagnose me with EDS, he’s the one who has also diagnosed me with Epilepsy. We are #Zebra strong…I’m the purple zebra!
![Blox Fruits Dragon Rework Update [Full Stream]](http://i.ytimg.com/vi/EqDAp8udhm0/mqdefault.jpg)
Thank you for the posting. It reminds me that we’re not alone. We are currently going through a very debilitating case related to EDS. We are hanging in there for proper treatment. Please pray for us. Thank you 🙏
I think we are as well! Diagnosed with so many things (and does it did have) like mold toxicity, bordatella, Babesia, TBIs, and meningoencephalitis. He now at 36, has a LOT of these issues!!! I don’t know who treats this in Michgan. 🙏🙏
Please get more Doctor's in North Carolina to join in . We sure could use more support in this state. Concerned parent!!!! I have to travel outside my state just to receive prolotherapy.
I'm in my 20's and have seen tons of doctors, had surgeries and go to the chiropractor. And I've only been able to truly know what was wrong with me this past year. It's been a struggle to have a doctor actually know anything about EDS or my POTS. Your community and professionals in this society has been an inspiration and has given me hope. Thank you.
Support in the form of information for family and friends of ppl with EDS would be helpful. Without that support many families fall apart leaving the EDS sufferer more isolated than ever. Coping with EDS is bad enough. Losing your partner and children because of lack of support is depressing. GPs and medical Specialists need to know the phrase "If you can't connect the issues, think Connective Tissues". Sometimes a simple Beighton Test taking 1 minute can stop the decades of negative investigations which are usually blamed on patient being "difficult" or "won't take advice" when offered unsuitable treatment. Swimming can help however many ppl with EDS have circulation issues so require temperature to be a few degrees higher. Hydrotherapy helps but 6 sessions a year doesn't. Some hospitals have pools for treatment of hip replacements, etc. I'm sure I'm not the only one who would pay to use those pools when not in use by other patients. Many of the musculoskeletal issues can't be seen on horizontal scans because of the effect of gravity, however despite mounting evidence that upright/dynamic imaging is required our only option is to pay thousands of ££s for private scans because they are incredibly rare on NHS. How many ppl, no longer able to work because of decades of misdiagnosis or lack of treatment, can afford private consultations? No GP should have preconceived ideas based on previous GP's mistakes. At age 50 I was finally diagnosed. At last I had the answer. Now things would improve. Just shows how wrong I was.. It took a further 11 years for dysautonomia, dysmotility, Mast Cell Activation Syndrome (despite all the symptoms being already in medical records for decades), Gerd, and so on to be diagnosed. But these are common comorbidities of EDS. How can GPs be so blinkered when a simple Google search can give the information they need? When did medicine start sending ppl with multi-systemic conditions to lots of different consultants causing confusion and conflicting treatment and medication? If someone has 'flu they wouldn't send them to 10 different specialist Consultants. So why do it with EDS. Yes, sometimes a few different Specialists may need to be consulted, however multi-systemic conditions are better treated by a Specialist in the condition. The same applies to the comorbidities. For instance the multi-systemic nature of MCAS requires 1 department to lead, making decisions about who else should be consulted and arranging treatment. Instead it's left to the patient to find someone in their area who has the necessary expertise to understand the condition. The patient then has to hope their GP can get them a referral. These referrals are usually rejected due to NICE guidelines or not possible because 99% of Specialists for MCAS are private. So the patient gets more frustrated as does the GP. On top of all this, Specialists in EDS are part of Rheumatology so have to see many other people with different issues. It's small wonder that those with necessary expertise leave NHS for private practice. A cost analysis would show that a couple of hours with a private Specialist would be far more cost effective than decades (or even a single financial year) of different NHS departments. That's just false economy. Many ppl with EDS would have been able to continue working longer and needed less hospital treatment (whether as outpatient or through A&E) if the diagnosis had been reached sooner. At my GP practice I'm now usually passed to 1 GP because she has ANOTHER patient with MCAS. There are probably many more out of 40,000 patients who haven't been identified yet. So now this GP has the added pressure of trying to learn about hEDS and MCAS as well as trying to treat all her other patients. No pressure there then! On top of that the treatment guidelines continually stop referrals because NICE still consider MCAS to cause elevated tryptase levels. It does SOMETIMES. In over 70% of cases there is no tryptase level increase. Mast Cells are responsible for 1000s of different chemicals being released in varying amounts, to different triggers. Sometimes they overreact. Sometimes the overreaction is of short duration and can be dangerous (e.g anaphylaxia). Sometimes it can be continuous in response to food, airborne pathogens, insect bites, etc. We just don't know. What we do know is that EDS is far more than just a simple Connective Tissue Disorder. There is more information on "EDS and it's Fellow Traveller MAST CELL ACTIVATION Syndrome" by Anne Maitland (available on RUclips.
Nearing my 4th decade and just diagnosed last year. EDSociety has been a huge help for me in terms of scientific education and coping. Thank you! 💌
My gastroenterologist specializes in us. He has Heds. He said 3% of the population has eds. Not 1 in 5,000. He wants the diagnosis of this disease to become so common that it is part of any medical exam.
I'm full of hope knowing that there is research. I'm wondering if there is literature about the frequent comorbidity with ASD (autism, asperger..) it seems there are some links.
Sometimes i'm feeling very lonely, doctors don't know what EDS is, so it's easy to forget that there are a lot of things going on all over the world.
Thank you.
Of course, l suffer from multiple problems in my body and no one has been able diagnose them , but most likely if you find Ehlers_ Danles syndrome
I have EDS and no it’s not easy but I’m going to keep on counting my blessings.# Zebra strong! I am praying for EVERYONE that has EDS! May God guide the scientists’s hands and they come up with a cure! Lord, please hear our prayers! Thanks to my Neurologist he was able to diagnose me with EDS, he’s the one who has also diagnosed me with Epilepsy. We are #Zebra strong…I’m the purple zebra!
I call myself the purple zebra is because I have Epilepsy along with my Classical EDS type two.