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This topic contains 5 replies, has 6 voices, and was last updated by  kamp2003 11 months, 1 week ago.

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  • #1082

    justmekansas
    Participant

    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.

    #1084

    Jules
    Keymaster

    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 Society
    #1085

    clam
    Spectator

    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.

    #1184

    veronicamae
    Participant

    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.

    #1191

    Burton
    Spectator

    I am sooo feeling your pain. My Dad has HHD and it’s pretty awful at times.

    Sincerely yours in health, Raven

    #1455

    kamp2003
    Participant

    Hi,

    I tried MANY different options (Keflex, which does work, but you can’t be on Keflex your whole life; triamcinalone cream, which thins out your skin which is SO bad for you long-term, but can be helpful temporarily; going gluten-free; going sugar-free; drinking scads of milk; and MORE!). My HHD was terrible under and between my breasts. My insurance covered a breast reduction surgery to help minimize the skin on skin contact area (to help minimize my HHD occurrences which had become 100% of the time for four years — I had consistently infected, nasty, pus-filled skin under both of my breasts). The breast reduction did help, but after about three months, my breakouts began again. I was desperate and would sporadically look online to see if anything had proven effective for HHD breakouts. Something SO simple and inexpensive and natural ended up being part of my two part cure. Tea tree and hemp soap [brand name redacted] (it’s orange and you can get a big bottle online or at Whole Foods for less than $15). I use it (and ONLY it!) in the shower in the morning (and at night, if I shower then) on my HHD prone area. I leave it on for about 30 seconds and then wash it off. I use it very last (after washing my hair, face, and rest of my body), so I make sure that the Dr. Bronner soap is the last thing that touches my precarious HHD skin area. I do NOT use any other sorts of soaps on the area (they REALLY irritate it which always causes big breakouts). The second part of the miracle cure (I believe this is my “cure” to my core!) is applying melaleuca on the area the second it starts feeling itchy or “angry”. I apply it a couple times a day over all of the sensitive/HHD prone skin area and I haven’t gotten a single breakout since. I use melaleuca [brand name redacted], but I’ve heard you can find essential oils many places. I just like how pure the [brand name] oils are — and it’s what has worked so I’m not messing with it! So, I went from four solid years of depressed misery to complete healing. I am not an overly emotional person, but when I think about how these two things have changed my life, I get teary. Changed my life. I can exercise now!!! I do take a shower immediately after exercising (I don’t leave my sweaty sports bra and work out clothes on any longer than I have to) and, of course, I use my [brand name] soap (I bring it with me everywhere I go). I can vacuum my house now without fear of getting a bit sweaty and then having my skin flare up and breakout. The other thing I do for my HHD prone skin is use a soft, bra liner ([brand name redacted] bra liner — just got them off the Solutions.com website) and switch them out every 3-5 days and wash them. This keeps the area from being irritated by bra material. I SO SO SO hope this helps my fellow HHD sufferers. I look back on my life before I was healed and I remember how defeated I was, and how I would scoff at the definition of HHD (it is often explained as a mild irritant). I feel like four years of my life were stolen. Now, praise the Lord, I am able to enjoy living an active and healthier life.
    * I live in Colorado — very dry climate. But, I do think the things that have healed me would work in any climate.

    • This reply was modified 11 months, 1 week ago by  Jules.
    • This reply was modified 11 months, 1 week ago by  Jules.
    • This reply was modified 11 months, 1 week ago by  Jules.
    • This reply was modified 11 months, 1 week ago by  Jules.
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