3/30/2009 08:37| More
I wish every patient in the world with Pachyonychia Congenita (PC) will connect with other PC patients who understand the pain (emotional and physical) they experience. PC is an ultra-rare disorder caused by a mutation in one of the keratin genes that are the building blocks of skin and nails. This debilitating disorder was named more than 100 years ago based on what was most obvious -- Pachy (thick) onychia (nails) Congenita (from birth.) But those suffering with PC know that PC also really stands for Painful Calluses (not only thick nails) and it is that constant pain that makes walking difficult and life a challenge.
PC is so rare that no patient had ever met someone with this disorder outside their own family members until 2004 when PC Project was established as a Patient Support group with the mission 'to find a cure for Pachyonychia Congenita'.
The value of connecting with another person with your same rare disease is poignantly expressed by this patient who has just found our patient support group, PC Project (www.pachyonychia.org): "I am so glad to have someone to talk to about PC. You know I have always been alone in this and I have always hidden my pain and my feelings. I’ve almost always been an outsider just because I'm different. I have a big family and they have supported me and helped me alot, but sometimes I don’t like seeing them sad about me so I always hide my pain and troubles. You know my feet hurt pretty much but I guess I got used to the pain.
"I can’t believe what people do to others who are different. My whole life I had to struggle with everything from being picked at in school and just to try to fit in. People do get afraid of things they don’t know, but I don't blame them. So many times I wanted to take my life just because how I got picked at everywhere in school or out. At one point I was so tired of the struggle and the pain, I wanted to end my life because it was so hard and no matter what I couldn’t change who I am. But now I try to make a better life, but it’s so hard. I hope someday we’ll all get better with or without a cure. We all deserve to live without so much pain. I’m not used to talking so much, but for the first time in my life I feel relieved and happy that I can share my pain and my struggle -- finally someone who understands."
In addition to the physical pain, this comment also illustrates the emotional pain and the important of connecting with others: "I'm eight years old and I'm in 2nd grade. I like the color blue. I love to play chess and checkers. I like to do mazes. Sometimes people run away and think I'm gross because I have PC. I feel sad and lonely - I just get this feeling that I'm alone in the world. When this happens, I just go and find something to do, and I've got this friend I've had since Kindergarten and I just go play with him if I feel really sad and we go have fun."
While we work for a cure and try to find effective treatments, I wish PC patients around the world can connect to support and encourage one another. PC Project wants to make a difference for this rare disease. Contact us at firstname.lastname@example.org and see our website at www.pachyonychia.org for more information and to enjoy seeing the wishes already fulfilled through our efforts.