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Saturday, April 30, 2011

But you don't look sick....

This post isn't about cloth diapers, but since May is Ehlers-Danlos awareness month, I thought I would write a post on EDS. For those who don't know, I have EDS and 2 of my children inherited it from me. (Possibly 3, but my son hasn't been tested as he has just recently started showing symptoms and could have a milder case). Ehlers Danlos Syndrome is a genetic mutation in the body that gives the body the inability to produce collagen properly, the glue that holds the body together.The body is about 80% collagen. There are 6 different types of Ehlers Danlos to date and are classified by the type of mutation and what types of the tissue they affect.

The disease is fairly rare and affect 1 out of 5,000 although these facts can be debated. Most types of Ehlers Danlos Syndrome are not fatal, however there is still a high risk of the individual unintentionally injuring themselves because the joints are lax and easily dislocated. Chronic pain can be a problem with this disease. Chronic dislocations and subluxations cause friction between bones which in turn creates inflammation and pain. Pain can be managed with an array of medications. To have a better understanding of how EDS affects the body, variations of the types are listed below:

Classic EDS.
Characterized by joint hypermobility, skin laxity, tears, bruising and fragility. The skin be stretched beyond that of an unaffected person. Also has a velvety feel to it and can be easily bruised and/or torn. Scoliosis is also common with this type of EDS. Is an autosomal dominant genetic trait.

Hyper-mobility Type
Characterized by severly lax joints, chronic dislocations, subluxations, and lax skin. Is an inherited autosomal dominant genetics trait.

Vascular EDS (Arterial Form)
Characterized by weak collegen bonds in the vascular system and in the organs such as the bowel and stomach. Also at birth, club foot, and hip dislocations can be presented. Veins are visbile through the skin This type of EDS can be life threating due to the fact that if a bowel or an artery ruptures, it can cause internal bleeding, sepsis and if untreated, death. There can also be minor to severe joint laxity and complications. Is an autosonal dominant genetic trait.

Kyphoscoliosis type
Characterized by fragile globes in the eyes, skin and joint laxity, and severe scoliosis, also known as a curvature of the spine. Is an autosomal recessive trait.

Arthrochalsia type
Patients with this type of EDS are often short in stature, and are severely affected by joint and skin laxity. A skin biopsy can help determine diagnosis. Is both autosomal recessive and dominant genetic trait.

Dermatosparaxis type
Characterized by severe skin laxity, sagging, stretching, and folding.

Some other conditions that are associated with EDS are Fibromyalgia, Celiac Disease, Migraines, Circulation and Temperature problems, and Postural orthostatic tachycardia syndrome, also known as POTS.

We are not freaks, or any different than the "normal" person. We are just more flexible, fragile, and in pain all the time. At lastly, EDS does not stand for Erectile Dysfunction Syndrome. :p

The pic is of the first of 6 finger stabilizers that I am being fitted with for some joints that have been giving me issues, (hello putting snaps on all of those Ultras! LOL)  I also have been gradually sourcing out my products as I just cannot keep up with the production of everything myself anymore, and it is extremely bad for my hands and fingers to keep trying to do it all myself. (Basically Hubs is forcing me to take it a little easier on myself, which is VERY hard for a type A personality control freak do it yourself-er like me!!) : But rest assured that every Blissful Booty item is still made with my patterns and designs and is inspected by me before it is packaged and sent out. I am still very "hands on" and will continue to uphold the integrity and quality of all Blissful Booty products! I hope you all will continue to support Blissful Booty as we grow!! <3 I appreciate your business and I hope to continue to create great products to share will you all!!
I am trying to put together a fund raiser of some type for EDS Awareness and Research. I will update when I have put something together.



  1. My dad and I have Hypermobility Type. I was the only one out of 3 kids to get it.

  2. We have Classic type. :) I am amazed that there are 3 or 4 Mama's so far on here that have it! I was sure that nobody would have heard of it! :)

  3. Not every post has to be cloth related. This is your page... You talk about what ever you feel you would like to talk about. Thanks for educating us on your erectile dysfunction! :)

  4. That is very interesting, I'd never heard of EDS before! Hopefully you can manage the pain well, and that it doesn't get to you too badly. My dad has RA, so I've seen what it's like going from using your hands all the time to not at all. Wishing you and your family all the best!

  5. Thank you so much. <3 I am off to my specialist tomorrow to be fitted for finger splints for a couple of fingers that are giving me the most problems, so I am hoping that will help. :)

  6. Congratulations! You have been received a Versatile Blogger Award! Check it out:

  7. I too had never heard of this... when I first saw the pic on facebook I thought it was a new ring or something. There's no way that could be comfortable, I thought.

    My hubs would make fun of me too, in a good way .)

  8. Thank you for sharing with us. I had never heard of it either, so I learned something new. <3 -Niki

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  11. Do you have a face book account if you do i would love it it if you would join my support group EDS fight for a cure thank you Loretta Moorehead