Dora died at home on December 22, 2009.
We are awaiting confirmation of the precise cause and details will be published here shortly on what we will be doing to honor her memory.
Dora had a number of serious, genetic, rare and/or underserved medical conditions among them Dercum's Disease. She was the owner of the website "Dercum's Hope" and had previously been involved in the now defunct Lipoma Forum website.
Dora is survived by her parents, sister Janet Maillaro of New York,
husband George Tomalonis of Michigan and a countless number of friends.
Despite being mostly confined to her home in her final years due to Ankylosing Spondilitis a form of arthritis in which the spine and other areas of bone fuse making life both painful and difficult, Dora touched an amazing number of lives through her advocacy.
Dora was well educated and absolutely brilliant with knowledge and life experience from before she was home bound that made her an extremely knowledgable source of information on a wide array of topics.
She was devoted to her friends and family and showed extraordinary insight into how to help other people. She was generous with her time working harder than many able-bodied individuals without the sort of financial compensation one might expect from the extent of her contributions.
Living with a rare disease is difficult in the best of circumstance. Dora had multiple rare disorders and to use a tired saying repeatedly "fell through cracks" in our health care and social services systems. Anyone who doubts our health care system needs reform and that absolutely everyone is entitled to adequate care should pick out any rare difficult disorder and track the life of someone suffering from such a condition.
Dora was my colleague, my friend, and she and I were very close. I considered her the sister I never had. There are no words that can express the extent of my sense of loss. I know that she would not want anyone to feel sorry for her and I take some consolation in knowing she is no longer in pain, and died quickly without suffering.
December 28, 2009