My Story:

Samuel Ryland

We met adorable Sam when still a baby

Sam has been the star of PC Project since 2004 when we first met him in his stroller at a Patient Support Meeting (PSM) in Dundee, Scotland. He has a spontaneous mutation (the only one in his family with PC). Since that first meeting, we’ve learned a lot from Sam and his family as he has grown up.

  • We knew of his physical pain as he has endured what we now know as ‘first bite syndrome’ which is caused by salivary glands (not ears) and results in excruciating pain for 15-25 seconds when a child takes a first bite or first swallow.
  • By age 5 or 6, Sam demonstrated how to trim his own nails for the Caring For PC video.
  • We were interested in the treatments Sam needed for his larynx as his breathing became affected and were grateful for the specialists who became involved to help without worsening the condition.

We’ve seen Sam every few years at the PSMs and his smile always lights the room. At the PSM in 2010, he was the Master Seller at the sales and auction table. And, if you didn’t come to the table to buy something, adorable Sam came to you with an invitation to shop that you just couldn’t refuse.

Sam has one of those sunny personalities that just gives you a lift. He always goes full out to do everything he can and never complains. A very typical PC hero!

PCers have a great attitude

It is "do all you can, as long as you can despite the pain!" We definitely cheer that approach. However, stories from young PCers (those age 12 and under) who have mild plantar pain and few cysts or other PC symptoms may seem to show you can just be 'tougher than PC.'  That approach is not the most effective, since when full grown, PC pain will increase to the point that being tough isn't enough. It's important that youth develop and find 'off the feet' activities and skills. Most PCers are very, very high achievers and find a way to excel although PC pain has a definite impact on quality of life. That's a whole story in itself!

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