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marden walker syndrome

Lynette Message
6 Nov 2008, 07:01 PM

I am trying to contact the lady that has a daughter with marden walker syndrome both of my kids have mws my son aslo has dandy walker malformation Thanks Lynette Daniel 15 mws and dandy walker malformation Tiffany 12 on dec 9 mws
Mellan Message
11 Aug 2009, 09:37 PM

Hi Lynette, You can reach me on Facebook. Just search MaryEllen Spencer. I'm in Virginia/DC
chris1011981 Message
7 Nov 2009, 01:14 AM

hi there im chris i was born with marden walker syndrome to how does it affect everyone else. i developed kidney failure and sleep appnea and undescended testes i also had hypersplasia ( urinate from two places) they removed both of my testes and replaced them with adult prostetic ones.. hence im infertile. my joints i cant straighten and i walk with an unsteady gait. im developing arthiritis in my knees can get quite sore sometimes when walking. i suffer from really bad dizzy spells sometimes (low blood pressure apparently) and all this to do with marden walker syndrome lol wow im 28 now and used to stop breathing for no reason until i grew out of that. if anybody has anymore information please could u email me at im from the united kingdom. many thanks ps to mellan you have a beautiful country (america) been to florida and had the best time ever.. god bless you