Posts

But What is Ehlers-Danlos Syndrome?

Image
According to the Mayo Clinic Ehlers-Danlos Syndrome “ is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body. ” ( http://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/basics/definition/con-20033656 ) Those who have Ehlers-Danlos Syndrome suffer from skin that is considered “stretchy” and “fragile.” They also have joints that over extend resulting in dislocations, subluxations, and pain. There are other major issues depending on which type of Ehlers-Danlos Syndrome is being talked about. Even when looking at the scientific explanations the question still remains, what is Ehlers-Danlos Syndrome? The scientific definition is great to have and know, but sometimes it just doesn’t answer the question about what it actually is. That happens for variou...
1 comment
Read more

Pregnancy and Children

Pregnancy.. It almost appears as a taboo topic of conversation at least when talking about the real details. It is always about the baby's gender, how far along you are, what names you like or don't like, baby showers, due dates, etc. How often are the nitty gritty  details talked about? When do we talk about the complications, struggles, risks, downsides? These aren't talked about often in a typical pregnancy let alone in an EDS pregnancy. The first challenge with deciding to have a family is completely different in an EDS pregnancy versus a typical one. In a typical pregnancy the first "challenge" is deciding when the right time is. In an EDS pregnancy the first challenge is having to weight the odds of passing on EDS to your children. There are lots of people who decide that the risks and odds are not worth it and end up choosing not to have biological children, or children in general. Another struggle is that during pregnancy hormones are released to allo...
Post a Comment
Read more

Ehlers-Danlos Doesn't discriminate

Image
There is often some confusion regarding the physical appearance of those with EDS and those with Marfan's Syndrome. Marfan's Syndrome patients are tall and thin with long arms, legs, fingers and toes. These characteristics are often confused with EDS. Many people believe that EDS is a "skinny person's disease." The people with this mentality and beliefs are mistaken though. EDS does not discriminate in the least. Things like age, height, and weight make no difference. EDS patients come in all shapes and sizes. These are some of the faces of EDS; Gary Turner Myself Miss America Contestant, Victoria Graham My TAM/Mentor for this project, Brooke Myleene Klass Jodie from Jodie's Journey Cherylee Houston Those are the faces of people who have officially been diagnosed or who came out publicly and stated that they had it. Below are some of the famous individuals who are widely suspected of having EDS. While they either w...
Post a Comment
Read more

Fractured Families

Fractured Families is an organization that was set up by multiple families who have had their families torn apart. From my knowledge and talking to other families with EDS, a lot of families face CPS/DCF throughout their battles with EDS and its associated illnesses. The lucky families have diagnoses, they have knowledgeable and supportive doctors backing them. These lucky ones walk away from these encounters with their families still intact. While there are lucky families there are also families that are not so lucky. Instead of their families remaining intact, their families are torn apart by various allegations, like child abuse, and munchausen/munchausen by proxy. The women who make up the organization, Fractured Families, have all faced the same type of struggles, despite having different stories. It is now their mission to "protect and advocate for families falsely accused of child abuse due to unexplained fractures in their infant." (Fractured Families Organization) Th...
Post a Comment
Read more

Spoon Theory

Image
There is a disconnect between those with EDS and those without. Those without EDS have no idea the fatigue, tiredness, pure exhaustion that we feel. They also don't understand how much energy it takes to do the simplest things. Those who do have EDS spend so much time trying to explain these things in a way that others will understand, but typically they aren't successful. As someone with EDS and various other illnesses I can't just say I am tired, or that I don't have the energy for something. When I say that I get responses like "you're just lazy," "you always have an excuse," "that is such a terrible excuse," "you're always too tired," and my personal favorite "you're not the only one in the world who is tired," etc.  People don't understand how hard it really is. Others don't seem to get that I, along with others with these same illnesses, remain tired 24/7. When I finally tell someone that I am t...
Post a Comment
Read more