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Patient story Hailey Hailey disease – a rare skin disease

“I am living again”

Melanie* is a young, optimistic woman who suffers from a rare skin disease – Hailey-Hailey disease1. Just when she has another flare-up, she tries to see everything positively and go through life optimistically. Melanie is an open-minded person who enjoys contact with other people. However, her illness made her withdraw more and more. The severe pain and open wounds severely restricted Melanie’s mobility. Fortunately, she is able to do her job as an executive assistant from home, as she often has to choose her clothes according her bandages.

Hailey-Hailey disease is a hereditary skin disease that often occurs in the armpit, intimate, neck and chest areas. It causes purulent and highly inflammatory blisters. In Germany, only about 200 cases of this disease are known, which is why Melanie’s diagnosis was made late. Hailey-Hailey disease cannot be treated causally. For this reason, treatment is mainly aimed at mitigating the complaints and symptoms. With the help of creams and antibiotics, it is possible to ease the symptoms. Nevertheless, treatment is difficult. Melanie’s wounds often did not heal for 12 weeks or longer, and a new episode was triggered after only three to five days of rest.

Melanie has also tried a wide variety of therapies, tablets, countless ointments and even two painful dermabrasions, but so far nothing has led to any real improvement. “I don’t think there is an ointment or cream that I haven’t been prescribed: Antibiotics, cortisone, light therapy, vitamin D, calcium supplementation, magnesium treatment, ‘dragon’s blood’, CBD oil, collated silver, salt spa, silver underwear, Octenisan treatment, bowel cleansing, preventative insoles to avoid friction and sweating, alternative practitioners etc. To be honest, I can’t think of everything, and all at my own expense,” says Melanie.

In her search for new possibilities for Haily Haily, Melanie came across a study with cold plasma – already two years ago. She contacted some clinics and doctors in the hope that someone would offer cold plasma therapy. But many clinics and practices did not know about this innovative therapy or did not offer it. After a long search, she found PlasmaDerm therapy via many detours.

In August 2021, Melanie started PlasmaDerm treatment in her own four walls. At the beginning, only small improvements were noticeable. After consulting a doctor, the therapy intervals were finally increased. After only three days, the wounds began to heal noticeably, with improved scarring. The pain also subsided quickly. “I have never experienced anything like this in all my years of suffering! I am alive again!” Melanie is happy today. She has not had an episode since then. Every now and then, the disease breaks out in small areas. Melanie then treats these immediately with the PlasmaDerm device and “nips” the wounds in the bud.

Since August 2021, Melanie has been able to pursue her beloved leisure activities again for the first time, such as swimming, jogging and reading. Her advice for sufferers:

“I wish every patient the strength to also take care of their illness and possibility of healing themselves. That is not always easy, especially in a severe phase of illness. But I know today that without my own commitment, I would still be sitting at home motionless. Therefore, never lose heart and think positively.”

Here you can find other emotional patient stories.

1 Notes on the disease at: https://flexikon.doccheck.com/de/Morbus_Hailey-Hailey

*Name was changed at the request of the patient
Source photo: Adobe Stock

Morbus Hailey Hailey

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