Skip to main content

Darnisha Davenport's Experience with EPP

After many years, I'm finally comfortable with being open about my health condition. This is one of the reasons that pushed me to start iKURLY. Not just for my hair, but it copes with my disorder as well. I have been living with a rare skin disorder since I was 15 years old. After so many doctor visits, dermatology consultations, and skin creams prescribed, no one could help me, not even knowing what it was. None of those things worked, just created medical bills out the roof. I stayed humble and did whatever I thought was needed to avoid the reactions, but as I get older, it's only getting worse. Recently I was diagnosed with EPP, short for Erythropoietic Protoporphyria. It is a rare skin disorder. It is not fun. It is painful, very painful and it burns. When I have outbreaks I can't do anything but step in shade, apply ice and become isolated so I can calm down. People use to make fun of me laughing at the fact me being allergic to the sun, but it's actually deeper than that. As life goes on I try to remain positive, happy because deep down inside I know I am blessed, and even though this makes me different...every day I try to look at it as a positive, that this is just one more way God added to my uniqueness from others. It kills me sometimes though, because as a little girl all my family did was TRAVEL...down South, sunny states you name it, and now when I try to go somewhere on vacation or just everyday living, I have to be cautious and stay protected. Pictured was my recent reaction. This is just a glimpse of what it looks like. My face swelled, I turn completely red, my skin was on fire..it's an excruciating pain you just have to endure until it goes away. I go through my moments. This is things people don't see or hear, I stay strong because I am strong to beat this.  The tears shed, people don't know what you go through daily, they judge your strength and how you wear it. I thank God I don't look like what I've been through. Even with my disorder my goal is to continue spreading happiness and positivity. I am now a part of a Foundation that is assisting me with specialist in finding a cure, and next week I'll be starting treatments. This is my testimony. Pray for me.
To learn more about EPP or sign up for Research opportunities please click on these links:
https://www.rarediseasesnetwork.org/cms/porphyrias
http://www.porphyriafoundation.com/get-involved/join-the-registry
                     Contact the APF TODAY for more information at 1.866.APF.3635!

"Remember....Research is the key to your cure!"




Comments

Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF

Q & A WITH PORPHYRIA EXPERT, DR. BRUCE WANG, UCSF 
The APF asked our Facebook friends for their top questions they would ask a porphyria expert.
 The following questions were submitted to Dr. Wang for his responses ... Q. Does EPP give us bad teeth? Also, do people with EPP get stomach pains or is that with the other porphyias? A. The porphyrin that accumulates in EPP patients is protoporphyrin IX, which does not cause discoloration to teeth or abdominal pain.
 The type of porphyria that leads to discolored teeth is Congenital Erythropoietic Protoporphyria. The porphyrias that lead to episodic abdominal pain attacks are the acute hepatic porphyrias. Q. I have EPP and I have a severe reaction on my hands and lips. Do I seek urgent care? Also, what can you even do when you burn your lips? A. The acute reactions to sunlight in EPP can be very severe and, unfortunately, there are not many effective options to treat the symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as ibup…