My daughter and I were diagnosed with EDS/hypermobility type.I think it might be a cross-over of hypermobility/vascular). She also has spina bifida occulta. Her problems have gotten worse the last 10 years.She quit her accounting job due to health and couldn't afford COBRA.We have been paying for prescriptions and medical help as we could. I don't know whether to concentrate on EDS or spina bifida.She is 28.
Severe constipation from birth
Severe abdominal pain from birth
Severe back pain upper and lower since teenage years
She had repair of rectocele,enterocele,re-attachment of uterus(no tendons to attach it to),but never been pregnant nor given birth.This is when EDS mentioned.
Eye laser surgery to reduce pressure in eyes
Veins seen thru skin
Excess diverticulitis pockets
Had ALIF for protruding disc,degenerative arthritis,stenosis,spina bifida occulta.I think it could be meng.-opening large enough cord may have moved in and out.ALIF also for severe lower back/leg/buttocks pain,but this occurred right after repair of vaginal area.Urologist thinks it was technique used
Self-catherizes to urinate
Can't eat fiber or in agony for a week
Trouble swallowing.Had her throat stretched,but still having problems and food going up nose
Her grandmother won't admit she has EDS,but she has the classic signs and had over 15 major operations for intestinal blockages and is blind from Retinitis Pigmentosis
Which syndrome/disorder is causing the most problems for my daughter?She applied for disability, but was denied - unbelievable!! We are either appealing or filing a new claim
Could she have chiari malformation or tethered cord syndrome?
The gastro dr.says for her to keep her intestines cleaned out b/c any pressure from food or gas in her intestines causes her to be in the bathroom 6 - 8 hours
She is on med for depression
Please help us!
Many thanks for posting the question via my forum.
Well i appreciate the way you and your daughter are fighting all the odds of the life. Just don't let this fighting spirit come down.
The problems she is facing is all due to ED Syndrome, which is a type of connective tissue disorder. We really can't do anything to fight this disease, except for avoiding it's illeffects.
Physiotherapy will help a lot and so will Calcium intake. Rest we really can't do anything presently. Just physical rehabilitation is enough and "Never say die" spirit will also help.
All the best. Will pray to GOD for best wishes.
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