Jan Tenant, Ringwood, New Jersey.
The first thing I did when I got my official diagnosis was to write a long letter to my family and friends to tell them what I had been going through with this mystery disease, PRP. The second thing was to join the PRP Facebook Support Group.
It was Tierney who accepted me into the group. I thought of her as a friend–and as a colleague in the attempts to make PRP better known and understood. I have been proud to have joined with her to contribute to the group in my own small ways.
She was always there with something useful to offer, and with her strength and perseverance, she was a true inspiration. It breaks my heart that she had to suffer so much- – particularly as I was improving every day. She had such debilitating and disfiguring symptoms for so long, had to put up with uncaring health professionals, and had worries about her own family and their finances–and yet managed to keep a sense of humor and continued to advocate for our rare disease, everywhere she went.
She gave comfort, advice, perspective, and motivation to all of us who needed it. I think there was only one occasion where I was able to return the favor to some extent, and that was when she was planning an airplane trip to Iowa, and had concerns about logistics and all the indignities of traveling with such a horrible disease.
Having managed a coast-to-coast plane trip at the peak of my symptoms, I tried to give her as much practical advice and reassurance as I could. This has been hard to write and I am sure there are many more specific things I’ve forgotten. But she had so many friends and admirers. Our collective memory will serve to fill in the gaps we as individuals may not recall or be able to put into words. I grieve for her and her family and only wish I could have known her better. I will never forget her.