March 1, 2013 at 11:56 PM #1082
I recently found out that the excruciating wounds all over my groin are from HHD. My mother must have “forgotten” (for the last 25 years) to mention that she has this awful rare skin disease that I had a 50/50 chance of inheriting. Well, lucky me…I did. I’m a single mother with a 2 year old and a 3 year old, I’m currently working in human resources, and going to school full time for my BSN and a Public Admin minor. I cannot afford health insurance, but I make too much money to qualify for any kind of medical assistance. However, after telling my mother of my symptoms, she decided to mention that she and my grandmother have been diagnosed with HHD and that what I was describing sounded exactly the same. So I took a sample of my affected skin (which wasn’t pleasant, let me tell you) and viewed it under a microscope and saw the separation of the epidermis from the basal cell membrane, so I’m quite positive this is what I have. I’ve tried every OTC corticosteriod cream, all kinds of ointments, pain relievers, etc., and nothing helps. At all. This is so excruciating, and any kind of medical advice/prescriptions/therapy is not an option for me financially. I know I probably sound extremely whiny, but I’m just so desperate. I can barely walk some days and it’s starting to interfere with my studying and work. I can’t even run around with my little girls anymore. Any (non-expensive) suggestions at all? Do certain foods or something seem to help anyone? Please, I really need some advice…anything at all that you think might help. Thank you everyone.March 2, 2013 at 12:01 AM #1084
Look through the home remedy section http://haileyhailey.com/archives/125.
There should be some ideas in there to help you get started without seeing a doctor. Friction and sweat are your biggest enemies – try to keep them at a minimum.
Good Luck!Jules, President, HHD SocietyMarch 3, 2013 at 12:49 AM #1085
I’ve had HHD for a long time. Although it took the MDs about 20 years to diagnose HHD. I am lucky not to have the extreme cases described by many folks with HHD. The symptoms come and go I have found that high carb and high sugar foods exasperate the symptoms. A low carb diet should help significantly. Always take a shower after exercise or sweating. Don’t let sweat accumulate on your clothes. To the extent possible, use “cotton” fabrics.April 2, 2013 at 4:54 PM #1184
One thing I need to avoid is anything made with yogurt. My family does also. I also find any citrus fruits create havoc for me. I have been fortunate yo have had Botox treatments that were miraculous. For the first two weeks, however, I was in the most excrutiating pain I have ever been in (and I have birthed two large sons in a small body!). After the first two weeks, though, I have been in remission in my arm pits from three years ago. I get small sores sometimes, but they are controlled by a prescription cream.
I am currently having a bad bout with it in my groin, and had cortisone shots last week – no help. My insurance is being contacted to inject the Botox there. I shudder about it, but if it will provide relief for three or more years, I will do it.
I bleed for those who share this disease. It is so debilitating, yet we are expected to go on with our lives. A broken arm, for example, is visible and it heals in six weeks usually. Our lesions are often hidden by clothing and they take nearly six months to heal. You all have my blessings.April 24, 2013 at 1:33 PM #1191
I am sooo feeling your pain. My Dad has HHD and it’s pretty awful at times.
Sincerely yours in health, Raven
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