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Dr. Andrew Rynne
MD
Dr. Andrew Rynne

Family Physician

Exp 50 years

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Diagnosed With Vascular EDS, Losing CSF, Fistula Keeps Opening Even After Many Head Surgeries. Is This EDS Type IV ?

Hi, my oldest sister was just diagnosed with Vascular EDS. She has been loosing CSF and has had 6 head surgeries to try to close her fistula, but it keeps opening. He doctor said that she has EDS type IV, but she hasn t been tested yet. She doesn t have any heart problem actually, she has a valve behind her ear and in her heart to help remove the CSF from her head and she has never had any organ rupture. She is almost 43. Do you think she has EDS type IV?
Wed, 13 Nov 2013
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  User's Response
HI
Thank fro choosing HCM,
EDS (Ethlers-Danlos syndrome) is disease occurs due to the mutation gene ( defect in synthesis of connective tissue, "COLLAGEN") for to confirm the type of disease clinical observation and the DNA study are needed, along with these, clinical history family history( this is inherited one) are also required, one has to go through the several test to get it confirm the final diagnosis, without these it is not possible to say anything. Take care of your sister. have nice day.
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Diagnosed With Vascular EDS, Losing CSF, Fistula Keeps Opening Even After Many Head Surgeries. Is This EDS Type IV ?

HI Thank fro choosing HCM, EDS (Ethlers-Danlos syndrome) is disease occurs due to the mutation gene ( defect in synthesis of connective tissue, COLLAGEN ) for to confirm the type of disease clinical observation and the DNA study are needed, along with these, clinical history family history( this is inherited one) are also required, one has to go through the several test to get it confirm the final diagnosis, without these it is not possible to say anything. Take care of your sister. have nice day.