It is great to have all of you as part of our community! Please give a little introduction about yourself and your life with HHD - or the life of your loved one(s). Feel free to share the physical or emotional challenges, or any aspect that you'd like to share. We would love to hear from you!
Welcome new members!!: It is great to... - Hailey-Hailey Dis...
Welcome new members!!
Written by
CindySiegelShepler
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12 Replies
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Hi Cindy, thank you for introducing us to this site.
I'm 50 and have been suffering from HHD since my early 20's. The past 3 years have been awful! I have been suffering badly. I have recently found an awesome infectious disease dr & his wife who have taken a great interest in trying to help me have a better quality of life with this. Lately we have been trying a product on my skin called altrazeal. It has helped heal some of my wounds. My hip & inner thighs have healed quite well. We have been trying it in the groin area & last week the armpits. Haven't had as much success there as it is hard to get the product to stay on without bandaging it. I know they will figure out a way to get it to stay on better as they really want to help me. I have also been on 10mg of prednisone to help bring the blisters down some. I also have been using a dakins solution I make @ home on my skin. It's made of sterile water, baking soda & bleach. I'm still hurting & have not cleared but I have been able to get around & do more the past few weeks than I have in a few years!
Thank you for sharing, Djfan88! It is most intriguing and exciting to hear about altrazeal. How does that differ from Mepilex? Dakins solution sounds wonderful because it is natural and cheap. It is great to hear that you have been able to get around and do more lately and are in less pain. Please keep us posted on your progress. Where can altrazeal be purchased or is it by prescription only?
Cindy, this is Suzanne from HHD worldwide. The altrazeal is a transforming powder that u put over the wounds. It soaks up the oozing & helps heal the wound. This is a clinical trial I am in with my infectious dr. They are also the ones who suggested making the dakins solution to help with the odor. So far I've had some success on the areas which we have treated. It is hard to get it to stay under the arms & groin as the movement kinda not let it stay in place. It is a powder which with saline turns it into a breathable kinda bandage. The one great thing about finding this dr is that they go out of their way to help me. I do know they will think of a way to try to get it to adhere to those areas better.
Hi Suzanne! So glad to have you here! That is truly exciting about the altrazeal! What else can you tell us about the clinical trial? Is the trial for HHD patients only or is it for all wound care patients? Once they have perfected the altrazeal then hopefully it will be available by prescription for wound care.
Cindy currently I am the oy one with HHD that is in this trial. My dr has used it on a diabetic patient with ulcer like wounds with great success. She has a few other patients she's treating also with great success. She really feels this will help me keep this dreaded disease as bay. She is also in direct contact with the president of the company & they are thrilled to see the success of how it has helped so far. Just getting it to stay on those groin & armpit areas is tough but she said she won't give up. This produce does not require a script. They have a website altrazeal.com which explains it & has a video of a leg wound.
Suzanne, that is really terrific that it does not require a script and they're so determined to keep perfecting it. I can't wait to review their website. If they want other HHD patients in the trial please tell them that we have a big pool of patients worldwide. We can round some up. Thanks so much for sharing!
Suzanne, any updates on altrazeal that you can share with us?
Hi Cindy I have had HHD for about 40 years but despite numerous doctor's visits I wasn't diagnosed with HHD until last year when my youngest daughter was diagnosed with it. I had a biopsy about 20 years ago and was told I had Pemphigus Vulgaris and was treated with Dapsone, Cyclosporin and Lymecycline. When I was told it was most probable that I had HHD as well the treatment was exactly the same. I am now taking 4.5mgs of LDN and although I haven't had an HHD free day for nearly 3 years now it is much more under control and nowhere near as painful as before. My mother and maternal grandfather both suffered from HHD. Unfortunately one of our two daughters suffers from it too.
It is great to hear from you! You sure have suffered for a long time with HHD and like many of us, the diagnosis was hard to come by. I am also on 4.5 mg of LDN and I feel exactly the same way -- HHD is much more under control. Perfect words to describe it. We don't have a cure for HHD but prevention is key and LDN is a good form of it, in my opinion. I am sorry one of your daughters suffers from it, but hopefully by following all we have learned she can keep it under control her entire life. Great to have you here, MELady!
Hi I have had HHD for many years, just break outs hear and there but now that I'm older just recently I've had a major breakout that has lasted for months and I'm ready to be done with it. I've been to dermatologists who have basically offered nothing other than creams (so disappointed) so I'm searching every site I can find. HHD is physically and emotionally challenging as everyone knows. I need help!
Sorry to hear how you're suffering! We also have a site on Facebook if you'd like to join: facebook.com/groups/HHDWorl...
I feel like Im going crazy ,Im soo tired of not being intimate ,I dont want people to see me walk I lost my husband because of this disease and now that I have a guy in my life I feel its just a matter of time .I need a break from this disease.