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Call for GVHD (graft-versus-host diseases) sufferers!
We have received many emails within the past few years from the skin GVHD sufferers about how to deal with skin GVHD – redness, rashes, scaled skin, itchiness and so on. Although we specifically focus on the children cases, increasing number of emails coming from the adult sufferers made us more aware that GVHD is an area we still know very little about therefore we have decided to dedicate a section for it where all ages may benefit from.
This section will expand with your contributions as we hear more from you. This section is, as we call it, “How did you?” project. Share your GVHD stories with us.
Despite the prescribed drugs such as immune suppressants and or steroids, many people suffer from mild-to-severe graft versus host disease after a bone marrow or stem cell transplant. Depending on the individual thus condition may last few months or few years. In same cases it may last many years.
If you are suffering from skin GVHD, here are the first set of advice we would like to give you;
Have a thorough dermatological check up - Before you agree to any further medical treatment, make absolutely sure that you are actually suffering from the skin GVHD and NOT suffering from an allergic reaction caused by one of the drugs you have been taking.
We specifically use the term “skin GVHD” because we haven’t been contacted by a chronic GVHD sufferer therefore we don’t know much about the chronic GVHD. If you are suffering from a chronic GVHD, please share your story with us.
Do not spend any money on the topical creams - people spend a fortune on topical creams with the hope that they will help the skin conditions they are experiencing. We haven’t heard any positive comment on this so far therefore we say that the topical creams do not work for skin GVHD.
The only topical cream that is proven to work is the prescribed steroid based creams - *unfortunately*. We say *unfortunately* because we don’t like steroids. We are desperately in the search for alternatives. If you have used something or tried something that helped you, please let us know about it.
Do not take anything orally other than what is prescribed for you by your doctor - the chances that an alternative medicine such as herbal medicines or homeopathic substances work for your skin GVHD are extremely low if you are taking conventional drugs. Because the conventional drugs are so strong any other alternative substances may not get a chance to show their impact.
If you have any experience with alternative medicine to help your skin GVHD please let us know.
Please use the comments below to share your stories and experiences. However, if you wish to contact us discretely please use our online contact form.
