Are there any diseases or disorders that are rare but have affected your or a lo

1. 65

   KrystalDposted 12 years ago

   Are there any diseases or disorders that are rare but have affected your or a loved one?
   
   Descibe the condition, how can or cannot be treated, cure or managed and how to cope. Are there any foundations the public should know about to help?

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2. 88

   weezyschannelposted 12 years ago

   Well, not to spam or anything on here, that's not my reason for commenting, but if you jot over to my hubs, you will see quite a few as we have had quite the problems.   
   
   Take a look if you want and that may give you several answers,  Too many and too long to go into, but it's a very good question to start I must say

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3. 77

   teaches12345posted 12 years ago

   I just talked to a dear friend of mine who told me she has battled with hidradenitis all her life.  The disorder seems to cause skin inflammation and boils that irritate and itch.  The only remedy is antibiotics which over time are ineffective in battling it and causes discomfort.  Would love to hear how others battle this ailment.

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4. 60

   las81071posted 10 years ago

   My daughter has VATER syndrome This is very rare although it is less rare now than it was 30 years ago.I have written a hub about it http://las81071.hubpages.com/hub/Learni … with-VATER
   http://las81071.hubpages.com/hub/Do-you … n-Donation
   http://las81071.hubpages.com/hub/Ways-t … continence
   She can be treated but not cured.Currently she has been on dialysis for about 5 years now and she has had numerous surgeries. With her medications, Bowel Management treatments and dialysis she is busy but lives a fairly normal life for a 9 year old. When she was younger we spent months on end in the hospital pretty regularly. She always had accidents and going out was no fun but with the help of bowel management and the dialysis treatments she is able to enjoy a day at busch gardens or the beach. She can't really get wet as her dialysis catheter must stay dry but she can sit at the edge of the beach water and let it run over her legs and for her she understands so she is happy with that. Hope this answers your questions. Also the only foundation I know about is like facebook groups and things of that nature,

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