Name: Kimberly McIntyre Age: 34
• How old were you when you were diagnosed?
- How long did it take you before finding out that you had Porphyria?
- Was testing easy or prove to be difficult? If so in what ways?
It was easy once we knew what to test for
• Do you remember your first flare/reaction?
No, I was 3 years old
• What did it feel like to you?
It feels like I’m burning from the inside out
• What things help you feel better? (Cool water, ice, shade, bath, clothes)
If I’m able to, a cool fan usually I’m just in too much PAIN!
• How long does it take before you start to feel better?
The first three days are really bad, and it takes a full week to be pain free
• What kind of clothing/trends do you wear when you go outside or in bad lighting? Always needing long sleeves shirts, but the heat triggers me as well.
• Do you enjoy being outside?
I love it but not when its sunny.
• What ways are you able to adapt to do certain activities outside?
I typically stay in the shade even then it’s risky.
• What fun things are you able to do inside your home while the sun is out?
I enjoy watching movies with my kids.
• Do you vacation or travel? Is this easy for you? What difficulty do you face?
Having to cover up and I am limited to what I can do. Parks are hard because of the lines and the rides are not in the shade and sometimes the wind will trigger me.
• Have you met any other Adults with EPP before?
My sister has EPP to.
• What things do you have to do to protect your skin?
Staying completely out of the sun.
• Is it hard for you to tell your friends, family what EPP is?
was when I was a child I was embarrassed now I don’t care. Most people don’t believe me. My daughter has it and I don’t want her to have the feelings I had about myself.
• What do you tell them?
I tell them I am a vampire (NOT REALLY) to try to lighten the mood. Then tell them I am allergic to the sun and it hurts more than you can imagine to be in it
• As an Adult do you ever feel left out, with activities?
It hurts when my son wants my daughter and myself to play with him outside on a sunny day and were not able to.
- How does this make you Feel?
Honestly, I feel horrible.
- Do you ever face depression or sadness?
- I used to there was one-point I had a bad reaction and I just wanted to give up. I didn’t want to live this life, but now that I am an adult I realize I am stronger then this and I need to be for my kids.
- Do you work?
- What type of work do you do?
- Is this a challenge with Sun or Lights?
No, not with sun or lights but the pain and tiredness.
- Has your work had to make changes for you to continue working without an EPP reaction?
• What advice can you share to help other Adults that have EPP?
Talk to others with it everyone is different and every time it’s you’re trigger time it may be different. We understand, and we are here for each other.
• Would you benefit from a new treatment?
It would be life changing
Thank you, Kim, for sharing an adult perspective on EPP. We hope that a treatment will be approved soon for everyone with EPP to benefit.