Hello my lovelies!
Where does the time go! When you have a chronic illness or condition ( or two, or three…) there never seems to be enough time for the spoons you have available. Keeping up with the blog, counseling people, advocating, living, (LOL) it gets exhausting, but I have missed you all! Today’s post is focused on Ehlers-Danlos Awareness. May has been designated as Ehlers-Danlos Awareness month, so all month long, I am going to focus on EDS, and try to bring you some extra resources and information to hopefully help any one who is newly diagnosed, or who may just have questions. I am pretty new to having EDS myself, so we will learn together!
According to Ehlers-danlos.com EDS is defined as “A group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hyper-mobility (joints that stretch further than normal), skin hyper-extensibility (skin that can be stretched further than normal), and tissue fragility.” This does not mean you have to have these two specific issues to have EDS. That is a myth, and one that is sorely outdated.
There is a lot of great information on their site, I highly recommend reading through it when you have the time. That being said, like most under diagnosed or rare conditions, there can be multiple different types, with different symptoms manifesting in different ways across the population. As you can imagine, this can lead to a great deal of frustration. Often times, family and friends don’t understand what we are going through, doctors can’t tell us what is going on, our bodies are doing things to us we can’t understand, and all we want are some answers!
As of 2017, there are thirteen sub types of ED, each with their own clinical criteria. This alone can make getting the proper diagnosis a nightmare. These are the current sub types.
- Classical EDS (cEDS)
- Classical-like EDS (clEDS)
- Cardiac-valvular EDS (cvEDS)
- Vascular EDS (vEDS)
- Hypermobile EDS
- Arthrochalasia EDS (aEDS)
- Dermatosparaxis EDS (dEDS)
- Kyphoscoliotic EDS (kEDS)
- Brittle Cornea Syndrome (BCS)
- Spondylodysplastic EDS (spEDS)
- Musculocontractural EDS (mcEDS)
- Myopathic EDS (mEDS)
- Periodontal EDS (pEDS)
- Pathogenetic mechanisms underlying the Ehlers-Danlos syndromes
Click through the links to be taken to each sub type of EDS to learn more about it. I have Classical, or in the UK, Hyper-Mobile EDS. I suffer from frequent, random dislocations, easy bruising, long healing times, easy scaring, velvety skin, and I look much younger than my actual age. My body hurts all the time. With Classical/Hyper-Moblie EDS, your surrounding muscles have to work harder to support your weak joints, which is exhausting. It can be very hard for someone to understand why you are so tired all the time, when you don’t really do anything!
Together, we can raise awareness and shine a light on this debilitating condition. Never forget my dear zebras, you are not alone!!