This month is #EDSAwarenessMonth. I will not forget the other conditions that suffer with similar issues to this however. There are many conditions that have the same problems with hypermobility. Hypermobile EDS is the main condition I suffer with and there are MANY other conditions that have heritable disorders of the connective tissue. We have Marfan syndrome, Stickler syndrome, Osteogenesis Imperfecta and more. Some of you may have heard of a condition called ‘brittle bones’ which is actually Oesteogenesis Imperfecta or OI for short. People who have OI also have hypermobile joints and this is also a problem for them like me. We must never forget these other conditions.
I do see online a huge push for EDS awareness and this is great news for people like me. Charities, bloggers and medical professionals trying to raise awareness for the condition and get people the right treatment. #EDSAwarenessMonth runs each May and we have a few charities trying their best to raise awareness of the different types of EDS. We also recently had a change in the EDS world in regards to the nosology. The classification of the condition has changed and many people found this frightening and confusing. I can completely understand why, as a lot of people with a diagnosis of EDS – hypermobility type were now classified as having hypermobile spectrum disorder. People were feeling like they were being ‘downgraded’ but it is very important to remember that this was really BIG news in the medical professional world. The treatment for both remain the same regardless of what your diagnosis may be. You as an individual have not been downgraded or be treated any differently as a result. Hypermobile EDS that it is now known as and HSD’s are treated in a very similar way in terms of the hypermobile aspect. The joint pain and fatigue are the same and will not be treated any differently. Charities like the HMSA are raising awareness as much as humanly possible to ensure that all medical professionals are aware of the new changes and that everyone receives the correct treatment. This will take a while to roll out across the country/world and so many people are working very hard for you all. If you are still worried, the HMSA Charity have a lot of information to help you understand and also to pass onto your GP/HCP. Click here for a letter you can print off and take to your Health care professional and here for a more in depth area they and you can read for help you understand the new classifications.
Marfan syndrome is also a heritable disorder of the connective tissue. They too suffer with hypermobile joints and this along with other issues, is one of the problems they face day to day. Chronic joint pain and fatigue, we are in the same boat! I am just wanting to personally highlight the similarities as I feel they are often missed and EDS seems to be shown online more and more awareness spread about this condition than others. I can understand why as we often feel forgotten about in the medical world, being told the pain is all in our minds etc. TRUST me when I say, I have been there, done that and got the T-shirt! It took me 11 years to receive any sort of diagnosis or treatment that I needed for hypermobile EDS. However, Marfan and other hypermobile conditions are just as important and the word still needs spreading as being diagnosed early could save lives! A beautiful friend of mine has Marfan syndrome and I see her struggles daily. Not just with her Marfan issues, with the daily joint pain and fatigue due to her hypermobile joints! You can see Shona’s lovely blog on Marfan syndrome here.
I urge everyone to learn at least a little about the other hypermobile conditions and help spread the word.
Thank you all for reading