I am 23 years old, and I have had Icthyosis Bullosa of Siemens all my life. For years, it was misdiagnosed as EHK, but after a visit to the National Institutes of Health about 5 years ago, I now understand what my disease really is.
I recently visited my doctor, and received all of the paperwork needed to begin Accutane- which I am very excited about. I understand from reading may accounts related to the side affects, as well as the warnings for the drug- that adverse reactions are possible. But I also understand that the side affects incurred are all specific to the individual.
What I am interested in is reading accounts of your first few months on the drug so that I will know what to expect and not be freaked out by new feelings or physical changes in the appearance of my skin.
If you are comfortable sharing, I would like to know what disease you have and the degree to which the retinoids helped you.
Please share your individual experiences.
I have already emailed a couple of you asking questions about your experience with retinoids. If you would like to post here as well, I would appreciate it.
If you would like to email me personally, my email addresses are email@example.com and firstname.lastname@example.org.
May God add an extra special blessing to all of your lives!!!