Sharing my story for Rare Disease Day

Today is National Rare Disease Day which in our home, has become an incredibly important and transformative day for the Swoope’s. For those that are new and for those that have followed along, here is a brief overview and update on our Krew man.

Our first born, Krew, was diagnosed in January 2024 with a very painful and rare skin disease called Pachyonychia Congenita, PC for short. Symptoms of the disease were prevalent right at birth and progressed over the first year of his life. It took about 6 months of different doctors and testing to finally get a proper diagnosis thanks to the incredible work being done at the PC project.

In short, Krew’s case is a spontaneous mutation, which means he did not get this from his parents and it does not run in the family. His brother had a 1 in a million chance of getting. But, now that Krew has the disease, he has a 50% chance of passing it to his children.

The disease prevents protection of the skin, and his symptoms, while manageable, are all over the place at the moment:

• blistered feet
• sensitive skin
• infection in nails
• excessive ear wax blockage

We use today to bring awareness to rare skin diseases and to inform others. Having a rare disease is scary as there is only so much research, not enough doctors to support, lack of understanding, and no cure. Thankfully, we have the PC PROJECT.

If you have any questions or are curious about Krew’s disease, do not hesitate to ask or reach out. Thank you