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Shadow Jumpers Tips & Tricks EPP

Tips and Tricks We know growing up with EPP has its challenges. You may have to cover up and look different outside or may be stuck indoors on those hot sunny days but what’s important is to know that you aren’t alone out there. Many kids, just like you, are dealing with long days finding things to do to dodge the sun and ways to let loose at sun down. Here at Shadow Jumpers, we’ve developed a section for Kids to hear from people just like YOU! Check back here soon to read some amazing testimonial stories from kids in our EPP community. EPP may be hard, but it’s something we continue to tackle together. TipsHave a tip to share? Email it to CLOTHING:I wear an oversized hoodie – the hood covers the sides of my face.  (Brady, age 12)Cut thumbholes in your sleeves to keep your jacket or sweatshirt over your hands without sliding up. This works great for young kids! (anonymous)Wear a big hat and walk on the shady side of the street! (Brenda, EPP)I hav…

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Misconceptions about living with a rare disease – the community weighs in

Misconceptions about living with a rare disease – the community weighs in Posted by Laura Mullen
A few weeks ago, we asked the community what some misconceptions were about living with a rare condition. The Mighty collected your responses and published them in the article below on February 28 for #RareDiseaseDay.
On World Rare Disease Day, groups and communities representing over 7,000 rare diseases gather together to unify their messages and support one another. With so many conditions, and new ones continuously being discovered, it’s sometimes hard for others to grasp what it really means to live with a rare condition, or care for someone who’s rare. The Mighty teamed up with the National Organization for Rare Disorders (NORD), a non-profit organization supporting individuals and families facing rare conditions through education, patient advocacy and research, and asked our communities, “What’s one misconception about living with a rare condition?” Their answers show that indeed, th…

Who are the Shadow Jumpers?

Shadow JumpersWelcome to Shadow Jumpers! This is a page for EPP kids and parents by EPP kids and parents. Shadow Jumpers was created to help give kids with Erythropoietic Protoporphyria (EPP) and their families a place to learn about this rare disease, read tips and tricks learned over time and to hear from fellow kids.  Through spreading awareness, fellow EPP interviews, tips to protecting yourself outside and some insight for parents, we hope all families living with EPP will look at this condition as a challenge they can overcome.  Be sure to check out all the Shadow Jumper resources! We’d love to hear from you. Reach out to us anytime on!! A main goal of Shadow Jumpers is to help kids living with Erythropoietic Protoporphyria do things they have always wanted to do but have not been able because of the sun. There are only several hundred diagnosed cases of this ultra-rare genetic disorder in the United States – so we need to learn from and su…

This critical OpEd was published today about access to Panhematin. Please share with your community and your members of Congress!

This critical OpEd was published today about access to Panhematin.  Please share with your community and your members of Congress!


Here is an updated NIH article please read and share with anyone who has questions.
The following information may help to address your question: What is porphyria?
How is porphyria diagnosed?
Is genetic testing clinically available for porphyria?
How can I find a genetics professional in my area? What is porphyria? Porphyrias are a group of blood conditions caused by a lack of an enzyme in the body that makes heme, an important molecule that carries oxygen throughout the body and is vital for all of the body’s organs. Major types include ALAD deficiency porphyria, acute intermittent porphyria, congenital erythropoietic porphyria, erythropoietic protoporphyria, hepatoerythropoietic porphyria, hereditary coproporphyria, porphyria cutanea tarda, and variegate porphyria. The most common type of porphyria is porphyria cutanea tarda. Some of the symptoms of porphyria include blistering, swelling, and itching when the skin is exposed to sun. Other symptoms may also include pain, numbness or tin…