Sharing my story for Rare Disease Day

When and how you were first diagnosed and how did that feel for you?

2018 – I think was the year I was told my condition was pachyonychia, I was so pleased it had a name that I could now tell people I had a skin condition that was rare as people always said you can pumice that off it is only hard skin !!

What is it like to live with your skin condition? How has it impacted your life, both physically and emotionally?

The pain is the worst for me when I get up in the morning and don’t look forward to that first step, but I know people who are worse off than me. I use walking aids and it has affected my ability to exercise as we use our feet a lot to stay fit. Swimming I love but it is painful when your feet come out of the pool as it is not good to keep them wet. I do cry sometimes as I have given this to my granddaughter who I adore and know she will suffer like me. I pray there will be a cure. I have also had radical surgery on my heel as I was diagnosed with melanoma but now healing and still under mcmillan care for 5 years.

What has living with your rare skin disease taught you?

Life isn’t much fun with this .. it gets worse as I have gotten older no relief PAIN

Are there any misconceptions about your condition that you’d like people to understand better?

Yes, it is not catching, people look at you as if you are dirty and don’t take care of yourself. A doctor once told me I need to wear proper shoes !!!! and this would not happen.

What more do you want to say about your rare skin disease?

It is ok to swear at my feet and tell them daily they are a pain lol xx