What is Pachyonychia Congenita Project?
PC stands for Pachyonychia Congenita or literally, thick nails from birth PC is cause by mutations in some of the Keratin Genes These are the proteins that give strength and integrity to your skin cells Mutations in these genes lead to thickened skin. Particularly on the souls of the feet, sometimes on the palms. They are often associated with blisters that have intense pain. PC is not an infectious disease. It's not something you catch like the flu or measles It's something you inherit from your parents, or something that can occur spontaneously in an individual One of the very interesting things about PC we don't understand exactly where the pain comes from That is part of our research efforts right now. We think that if we can understand the pain that is associated with PC we might have a better understanding of pain in general PC has affected me in a sense that I have to always be aware of the compromises and the trade-offs as I go and choose activities that I choose to do throughout my life.
I always have to remember and recognize that regardless of what I choose there will always be that constant pain. Having PC affects my life in a lot of ways mostly its the pain but also emotionally. Society as far as having something wrong with you, there is a stigma. Some of the obstacles: it's hard to have a normal life when your constantly trying to hide something about yourself. A lot of people can relate to that in a lot of different ways. Being with the PC Project has helped me embrace myself more. Pachyonychia Congenita Project is an international collaberation of physicians, scientists, patients, and others in the community. Working together to find a cure for PC PC Project is quite amazing.
It is very unique. There are very few other conditions where you have a support group who is so motivated and so well organized. It has attracted so many top line scientists. It is absolutely unique. I think it is wonderful. Especially all the work these doctors are putting into this really not doing it for money.
Just doing it to help a small group of us out. Contact the PC Project because they make it very easy. They encourage you to find out if you have PC.
If you do have PC They go to great lengths to make sure you find out what your diagnoses is what treatments are and get you in touch with other doctors who can help you. The important part of PC Project is that we work together. There is not one group leading. All of us are equal partners; patients, physicians, scientists. Because of the donations of time, expertise, resources, money both from the PC community and from the public, We've had success. We need to continue to have that support to succeed.
PC stands for Pachyonychia Congenita or literally, thick nails from birth PC is cause by mutations in some of the Keratin Genes These are the proteins that give strength and integrity…By: Pachyonychia Congenita Project
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