Suzanne Volkman

Suzanne Volkman

Patient Expert (USA)

I was Dx at age 4 years Father found out it was passed down to me I am a 1 degree pedigree. Father passed at age 54. I was 12…On his Death Certificated caused of death Massive Cerebral Brain Hemorrhage secondary condition Ehlers-Danlos Syndrome. He was my life.

I decided at age 21 I would have a hysterectomy to prevent another human being not to suffer through the trials and tribulations that children go through. I wore a plater body cast my freshman year, it did build character, but not the child should go through. I am fused from T-12 throughL4. I have two total shoulders (reversed).

I am a retired Neurological . 1st Assistant Registered Nurse. Had to retire from this profession due to developing 3 DVT’s in my right leg from standing. Yes it did have some thing to do with standing for hours, studies have been done on normal people who stand for long periods of time this can happen to them to but due to EDS it is probable this is more likely to happen.

I have two total shoulders (reversed) through a PE from the first Shoulder due to not giving Lovinox to protecting me from throwing a clot. I was released from hospital and 5 days later I Dx my own PE. I warned the surgeon I had a hx of DVT and he didn’t listen of course. Back to the hospital for blood thinning protocol.

I have a thriving out look on life. I learned massage and became a yoga master.

I Teach Medical Doctors when I am injured. Another trip to the ER. They don’t have a clue what EDS is unless they read it out of a medical book. Due to the knowledge I have living daily with this gift, I must be firm and train them as a human not treating me out of a text book.

Treat the patient first and then you will get the dx.

Teaching MD’s how to work and listen to me being my own advocate and being firm when am right and they are just not education with EDS, The Medical Societies as whole are not familiar within this syndrome and they have to follow a certain protocol. This makes it difficult for the patient. I have saved my own life many times in my life. Knowing what sutures to use on injuries what techniques to use how many etc. And mentally and spiritually how to handle it.