Ehlers-Danlos Syndrome

EDS is a group of inherited disorders that affects your connective tissues and is caused by abnormalities in
the structure, production, and processing of Collagen.
Collagen is the main protein in skin and other connective tissues, such as tendons, ligmants, skin, cartilage, bones and blood vessels.

There are six major forms of EDS:

  • hypermobility :
  • Classic : Often mistaken for Hypermobility and has more significant skin and soft tissue manifestations. Connective tissue disorder characterized by skin hyperextensibility (Excessive stretching of the skin), abnormal wound healing, and joint hypermobility (joints that move beyond the natural range). It includes two previously designated subtypes (EDS type I and EDS type II).

 

  • Vascular : Usually manifests thin, translucent skin, fragility of soft tissue and scarring. Predisposition to spontaneous rupture of hollow organs (primarily arteries, intestines, and uterus.)

 

  • Kphosoliosis : deformity in the spine caused by an abnormal curvature of the vertebral column. It is a combination of kyphosis and scoliosis. Kyphosis is an excessive curvature of the spine in the (A-P) plane.

 

  • Arthrochalasia : autosomal dominant, rare, and dstinguished by congenital hip dislocation and more severe skin manifestations Skin hyperextensibility with easy bruising. Tissue fragility including atrophic scars ,Muscle Hypotonia (Hypotonia means decreased muscle tone.) ,Kyphoscoliosis ,Radiologically Mild Osteopenia (bone density that is lower than normal peak density but not low enough to be classified as osteoporosis.).

 

  • Dermatosporoxis : soft, doughy skin that is extremely fragile; saggy, redundant skin, especially on the face; hernias; and mild to severe joint hypermobility.

 
I have the hypermobility type. This form is usually considered one of the least severe types, however; serious musculoskeletal, skin, and soft tissue complications occur more with this type. It mainly affects my joints and bones and makes it hard for me to do day to day things. It’s hard for me to stand for long periods of time, and do stuff like climbing steps and even washing my hair.

-Stay Beautiful!

-Cassie

How Will I Be As Time Goes On?

Today i felt more exhausted than i have been in about a week. I was dragging trying to find things to keep me awake and busy. I decided to write the doctors that have helped me and cared for me in this journey. I wanted to make it special so i decided to do it myself. Went to the store to buy some blank cards and some decor for them. As I got home i realized i grabbed envelopes instead.. ugh.

My pain and soreness is still bad from the other day, i could really feel it in my shoulder and back today. Wasn’t able to do as much as i wanted to which disappoints me. I ended up falling asleep around 3:00pm and slept till around 5:40pm. I woke up tired with a bad headache, which thankfully is starting to go away.

I wish I had energy during the day time as i have a lot of things that need to get done. I feel like i’m not doing enough in my everyday life, i’m either really fatigued or sick. Looking back now at all the things i was able to do and loved like dance it saddens me that i can’t do that anymore. As of now i get tired and achy from washing my hair. How is life going to be as time goes on? Will i have trouble doing more things? These questions i wonder everyday..

Stay Beautiful!

-Cassie

 

My Day..

My day today was long and tiring. It all started when i woke up, i reached to push my hair behind my ear and my shoulder dislocated. Luckily it popped right back in, my shoulder and the surrounded area is so sore.

Not even 2 hours into the day and i felt so exhausted i could drop. I tried doing everything i needed to do before i took a nap. I then slept for about 2 hours and woke up still fatigued  (Some of you can relate if you have chronic illness), as i was walking to get changed out of my pajamas my knee cap popped so loud my mom could hear it in the next room. That was the most painful dislocation i have had all week so far.

For the remainder of the day i tried to keep relaxed and settled hoping to ease the pain, nope..my body didn’t want to cooperate (lol). I have noticed a lot more recently about how much my EDS effects my everyday life, looking back i can’t remember a day where i felt pain free. I don’t know what not having pain feels like, everyday my body aches and i get massive pains in my stomach as to where it doubles me over. To me my pain has become part of my everyday life..To others my pain would be absolute hell.

Everyday has become such a struggle but i can’t let my EDS stop me from everything. I’m strong enough to get through this…You’re strong enough to get through this..We will do it together a step at a time. Were Zebra strong!

Stay beautiful!

-Cassie

What is Collagen?

What is Collagen?

Collagen is the main structural protein found in skin and other connective tissues and gives support to connect parts of the body together. There is over thirty different types of collagen found within the body. More than 80% of the skin is made up from collagen. It is found in tendons, ligaments, and cartilage around joints and also the blood vessels.

In those who have EDS lack collagen and connective tissues can become weaker, that leads to things like fragile and stretchy skin, unstable and loose joints, fragile blood vessels and body tissue.

Why the Zebra?

Why the Zebra?

According to The Ehlers – Danlos Society those who have EDS identify themselves as zebras! There is a saying “When you hear hoof-beats behind you, don’t expect to see a zebra.” This is because they are taught to look for the more common diagnosis, not the unexpected.   EDS is rare, so the medical profession does not look for it, especially in young people.  That’s why it is usually under diagnosed or misdiagnosed.

Everyone with EDS has different symptoms, different types, and different experiences. We are all working together to hopefully one day find a solution!

This Is Me

Hello! My name is Cassie and i would like to share my story with you. I’m sure many of you had the same experiences I did. I started to have numerous medical problems that doctors were not able to find the answers to.

My bones and joints were popping out continuously causing extreme pain. I had rapid heart rate and heart palpitations along with Mitral Valve Prolapse.  I had chest pain, skin issues, Scoliosis, GI issues and urinary issues. My eye sight got worse and I had extreme fatigue.

Doctors were unable to find causes for these issues. Some went as far as saying “You don’t know what pain is” and “It’s all in your head”. I’ve been to a Cardiologist, Rheumatologist, Neurologist, Orthopedic, and Psychiatric doctor.

After over six years i was lucky enough to find a good Orthopedic doctor who referred us to a Genetic doctor. Amazingly, she put all the pieces together and was able to diagnose me with Ehlers – Danlos Syndrome (EDS).

But now, what do I do?

Hello Everyone!!

Thank you all so much for viewing my blog! I’m still in the design phase but please keep checking in.

I’ve been diagnosed with EDS Hypermobility and probably, like you, searching for others like me and answers. I look forward to sharing my story with you and hope that we can help each other.