Pyoderma Gangrenosum is a rare ulcerative cutaneous disorder that causes tissue to become necrotic.
https://www.facebook.com/groups/368163159232?ap=1 and https://www.facebook.com/groups/56007379235?ap=1 are available to PG patients on Facebook! Plenty of info and support are available there. Best, Harley
Hi Kerry, I don't mind posting my email address on here, email@example.com, if you want to contact me. It may be more helpful for others though to discuss successful treatments here. I'm still struggling with healing the ankle ulcer so I'll look into the Hydrablue that you mentioned. I haven't been able to wear a full shoe for a year now. I would love to go the beach so I need to get this healed. What nutritional supplements did you use? I found that when I started the SCD diet that my old scar healed up completely and now you cannot even see where it was. I'm hoping the same thing for my ankle. The first one happened with a tiny nick from a razor when shaving my leg and the second happened when I had an accupuncture treatment. Maybe having some of that hydrablue on hand will make me feel more confident, just in case. I went to a homeopathic doctor today for the first time for immune system treatments. He says that the pyoderma is the immune system reacting at the cellulare level and seems to believe he can get my immune system in balance with various homeopathic treatments. I'll let you know how that goes. Please try the SCD diet for your daughter. It's a healthy diet and it works wonders for many inflammatory diseases, and even autisim. It's a bit strict but well worth it. There is a website for parents of kids on the SCD diet called pecanbread, it has a lot of great info on it.
Thanks for all the information Shirley Ann. I can't figure out from this site how to contact you directly. As I mentioned in response to your other post, we had great success with nutritional supplements (some of which we ground up and applied topically) as my daughter did not respond well to Prednisolone. We had been told it might take up to a year to heal the ulcers but managed to do so in 10 weeks and had great success with the scar tissue too. Would be happy to tell you in detail what we did. But not sure how I can email you directly?
I've had only two episodes of PG and pray God to never have another one. I have been without medical help as no one here has ever heard of it or treated it and a plastic surgeon in the hospital cut away some skin without my permission and against my protest that it would exascerbate it, which it did, turning 2 ulcers into 10 new ones. I found relief by searching internet research articles and I treated it successfully with prednisone, .5 milligram per kilo of my body weight. The ulcers responded immediately but still have taken a full year to heal and are not healed fully yet. They have closed but the skin is still very tender and I can't wear shoes as it's on my ankle. I also used an over the counter steroid/antibiotic cream. I have heard that it's often related to IBD, which I have, Crohn's, and each bout of PG came after a flare-up of the Crohn's. So I sought a cure for the Crohn's that was not a deadly immune suppressant and I found it in the the SCD, Specific Carbohydrate Diet. The book, Breaking the Viscious Cycle, has been a lifesaver for me. I have had no Crohn's symptoms for the past 10 months I've been on the diet. I now take no medicine for the disease, only diet. It's the first time in 30 years that I have been free of the Crohn's symptoms. In relieving the Crohn's I'm hoping that the PG will never appear again. Though I am always very fearful of a cut or puncture that may turn into this nightmare ulcer. If you want to know more about using diet to relieve auto immune diseases, you can contact me or search "SCD" or Specific Carbohydrate Diet, or Breaking the Vicious Cycle".
Hi Shirley Ann, I'm interested to read about your success with diet. We have also found great success with nutritional supplements and detoxing our house so that all the personal care products we use have no harmful ingredients. My daughters scar is also healing really well which I put down to the Hydrofera blue dressing and a specific oil I use.
I'm so sorry for your child who has this, I treat each scrape or scratch as if it may become PG, but I'm not really sure what to do except put on some steroid cream and bandaid and wait 5 days. I personally believe that if our sed rate is low and near the normal range scrapes won't turn into PG so I try very hard to keep my inflammation down with diet.
As the mother of a pyoderma gangrenosum sufferer I find it very difficult to work out how to cope with scrapes and scratches. Do we need to treat each one as a potential lesion?
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Evans Syndrome 2012 with all three counts (red, white and platelets) way low. Steroids, chemo and transfusion seem to have me back on track...
By: David Sellers
P.G. is a very rare genetic disorder characterized by lesions and skin death primarily on the legs,...
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