Is this definitely hereditary? - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Is this definitely hereditary?

geminimax profile image
8 Replies

Hi everyone,

My mother died when I was seven years old, she had a Cesarean section and hemorrhaged. Earlier this year my Dad died and after looking through some of his papers I came across my mother's death certificate and under cause of death it says:

1a, subcutaneous hemorrhage and pulmonary collapse due to

b, ceasarian section.

11. Hyperlastoasis cutis (Ehlers-Danlos disease).

I have an appointment to see my G.P in a couple of weeks. After looking up Ehlers-Danlos, It does explain a lot of my past medical history, the other kids at school were always fascinated by my doughy skin.

This site has been a great help, but I still don't understand how this illness/disease contributed to my Mother's death!

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geminimax
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8 Replies

Unfortunately yes eds is a genetic mutation and is passed on through your parents' DNA. Why not take your mother's birth certificate with you and ask for an explanation of they believe happened? X

sorrh death certificate *

geminimax profile image
geminimax in reply to

yes that's what i intend doing, but appointments not till 1st June, so just thought id ask on here first......Thank you.

Reikiblossom profile image
Reikiblossom

I'm sorry to read about that. It struck a chord with me, as although I have not yet had a diagnosis of EDS, I have recently been told by a podiatrist that I am hypermobile and had a second orthotics nurse (? Specialist?) ask about my hands and confirm it on seeing my bendy fingers. I have many other symptoms besides and a current diagnosis of FND with CFS.

The reason that your post struck a chord was because I became a mum in 2008 but the labour was difficult and I ended up with a c-section and within 48 hours I haemorraged because my uterus tore in two places, so I had an emergency hysterectomy. I am very lucky to still be here, after 8 hours in theatre and a lot of transfusions. They couldn't tell me why it had happened.

Thankfully, my child is healthy but I now worry that I may have passed something on that hadn't been noticed in me. I'm now 41 and, funnily enough, also going to my GP on 1st June to explore the likely possibility of EDS and hopefully, finally, get a diagnosis which explains much of what my body has been doing throughout my life.

geminimax profile image
geminimax

Thanks for your reply, as i was growing up my father always told me that my mother had been "one skin short" and therefore took longer healing. I can only assume that he never questioned the cause of death on her death certificate. I have had 6 normal births, but I have had and op on my bladder and two hernia operations, also several muscular problems. I had never heard of Ehlers-Danlos up until a few weeks ago, but it does explain a lot of things now. So glad you and your child are ok, my brother was born healthy even though my mother died.

trekster22 profile image
trekster22

Hope you manage to get some answers soon and the appointment went well.

Nomigrrl profile image
Nomigrrl

Hi, just wanted to share my experience in case there are worried mum's to be on here. I also have EDS and a whole bunch of crazy symptoms... my biggest fear when I was pregnant was that the baby would be born too quickly and wouldn't get to the hospital in time..or that I would prolapse before I was full term and need to be stitched up to keep the baby in... apparently that's a thing... I myself was born in an ambulance on the way to the hospital... My labour as it turned out was pretty quick, just a couple of hours, I did it drug free in a birthing pool, it went fiiiine...(except for the 2nd degree muscle tear I was hoping to avoid on account on my skin type, but that's very common).... but I just wanted to share that.... So in regards to the previous posts, it can go the other way too....the most important thing is to not worry. My daughter clearly has Inherited my Hypermobity but already she is better off than I was because my mum had no idea what that was (or is!) And had me doing all kinds of activities that fabricated it... My daughter won't have to grow up not knowing what the bells going on with her body...and I'm sure by the time she's my age there will have been huge leaps forward in treatment. Stay positive sisters xx

Nomigrrl profile image
Nomigrrl

#+# aggravated not fabricated 😆

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