Taking the Mask Off

Venice was one of the highlights during the summer of 1987; walking the ancient streets, eating warm cantaloupe with a Swiss army knife, and listening to random people sitting around a guitar singing in various languages.  What was most fascinating for me were the elaborate costumes and masks on display in various shops. At the time I didn’t know why they existed but as I got older I realized it was very similar to our Mardi Gras.

There are three traditions which closely correlate: The Venice Carnaval (masquerade), Mardi Gras, and Purim. They all happen very close or coordinated with the weeks before Lent. Purim is a Jewish celebration honoring the bravery of Esther and happens two weeks before Passover. The Venice masquerade and Mardi Gras end their celebration on Fat Tuesday the day before lent starts. The commonality is that ones identity is hidden behind masks – thus young and old, rich and poor and people of various cultures all celebrate together.

I’ve learned over the past three years that having an extreme autoimmune disease is like wearing a mask in general society. If the overlaying issues of the disease are managed – most people can’t see that we are sick. When I attend conferences that mask comes off and it is a bit shocking to see that these diseases effect every race, every age, every social and economic group – we are all in it together and are finally able to take off the mask of being okay.

What the research doctors at the University of Buffalo are studying right now in the Dermatology department and other departments researching Lupus, Diabetes/Endocrinology,  and Multiple Sclerosis, all have in common is that the primary goal is to take the mask off of autoimmune disease.

I had a conversation with Dr. Sinha and Dr. Anhalt  centered on the issue that all of these B Cell related autoimmune diseases have very close similarities and that the information being discovered in one program could be extremely important to another research project in a different department or school. This is actually why Dr. Sinha at the University of Buffalo is trying to establish a Center for Autoimmune Disease.  For example: a center like this could correlate data gained by different natural history studies looking at the co-existing autoimmune diseases to better influence study to be done on particular similarities and potentially finding either cures or ways of preventing higher occurrences.  Right now – that is only being done if a particular researcher is looking for specific information and does the legwork to compile it. Someone else in another department at another university might be doing the same homework thus duplicating – an immune center like this could literally become a resource center for research doctors worldwide enabling them to then focus on new information instead of gathering existing.

I’ve been actively campaigning in the last month or so as a fundraiser for the UB Dermatology immune study I am personally involved with – in the form of a patient. If you would like to donate even $10 to help build out that study which is making BIG strides in Pemphigus Vulgaris (but those discoveries could directly impact many other extreme autoimmune diseases such as MS, RA, and Crones) please visit my personal web site to donate for this particular cause.

If you are interested in helping Dr. Sinha get this Center for Autoimmune Disease up and running please go directly to the UB Donation Page and specify when giving any amount of money that you want it to go to this particular cause.

Thank you and may you live your life mask free.


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