- Pityriasis Rubra Pilaris
- Interviews
Caroline's interview
How did all start?
I have had a skin disease since i was a baby. It cleared up and then when i was 14 i had chicken pox and i had a dry scalp and patches on my face since then. Last April, when i was 47, my scalp and face went mad and i could not close my eye as the skin was so dry and tight. I couldnt talk very well or eat/drink as i could not open my mouth. I saw a consultant June 2017 and diagnosed with Pitriasis Rubra Pilaris in November 2017
Do you already have a diagnosis? How long did it take you to get it?
5 months
For what medical specialties have you been treated? What has been the most useful specialty for your?
Ultraviolet light - very sore and itchy.
Vitamin A - very sore and itchy.
Just started Methotrexate - 2nd week in
What has been the most useful thing for you so far?
Balneum Plus cream
What have been your biggest difficulties?
Finger nails - thick with long black lines in the nail. Difficulty with temperature - cannot handle air conditioning. Visible rash on my neck, chest and arms. Whilst I have had dry patches on my face, I have always worn foundation and its hidden most of it. Not being able to wear eye makeup. Eyes watering - very dry upon awaking in the mornings. Tiredness
How has your social and family environment reacted? Have your social or family relationships changed?
I've always had a skin condition so I haven't noticed anything different.
What things have you stopped doing?
Carried on doing the same - force myself as life is so very short. Apart from I have stopped having sport massages.
What do you think about the future?
Try not to think about it,
So far, which years have been the best years in your life? What have you done during them?
I think having children and in my 40's - less worried about what other people think of me.
What would you like to do if you didn’t have your condition?
Sport massages as I am naturally a very tense anxious person and I hold all my tension in my shoulders and back. Wear make up!! Have my nails done!!
Finally, what advice would you give to a person in a similar situation?
Keep positive - you are the same person inside and if others cannot see the true you then they are not worth having in your life.
