For most people, summer is the best time of the year – sunshine fills the sky, the temperature rises, and everyone is feeling just a little bit more carefree than usual. If you're like me, however, you can't wait for summer to end – because sunlight is your body's worst enemy.

When I tell people that I was born with a genetic blood disease that basically makes me allergic to the sun, their reactions are mixed. Some people refuse to believe me and tell me that I should probably just wear more sunscreen, but most people are perplexed and want to know more about how it works.

My disease is called Erythropoietic Protoporphyria, or EPP for short. Individuals that are affected with EPP have abnormally high levels of protophorphryin IX in their red blood cells and plasma and are also extremely sensitive to visible light (this not only includes the sun, but often artificial light as well). Thus, we are very photosensitive, which causes highly painful reactions.

My friends and family are always wondering about how I feel in the sun, and this can be difficult to describe to others that don't have EPP. The best way I can describe what happens is that, after about 20 minutes in the sunlight, I start to feel a tingle on the surface of my skin. If I don't get inside or out of the light fairly quickly, this feeling starts to escalate, as though I am being submerged in boiling hot water or being stabbed all over by knives.

The feeling does not go away for a day or two (or sometimes even longer) and I'm forced to avoid sitting by any windows (including driving around, as even sunlight coming into my car can cause a reaction inside of me), keep all of the lights around me turned off, and immerse myself in very neutral temperatures (hot temperatures intensify my pain, and cold temperatures cause me to become even more sensitive – sometimes I even swell up and develop blisters and/or little white scars that may or may not eventually fade away).

This may sound pretty awful and disturbing, and I'll be honest in saying that it is. However, I am actually lucky in my condition; others that are affected by EPP have it so badly that they are unable to ever go in the sunlight and must wear protective clothing and avoid light at pretty much all costs, and some even have to get liver transplants, as the sun (in rare occasions) can damage our organs.

Meanwhile, artificial lights only bother me after the sun has already taken a toll on my body; I am fine in the sun a lot of the time. EPP is highly unlikely to shorten a life, but it does lower the quality of life and hinder everyday activities for an affected individual.

EPP is a rare disease, and it is estimated that only about 1 in 75,000 to 1 in 200,000 people have the disease. Due to the rareness of EPP and limited knowledge of the disease, there is currently no cure for EPP. However, there is hope: A new medicine, Scenesse, has now completed trials on EPP patients in the United States. It is currently available to citizens of Italy and Switzerland. Scenesse is a small implant that is injected under the skin, which activates skin pigmentation to darken the skin in order to provide photoprotectivity to EPP patients. So far, the medicine has proved promising and has gained support to seek FDA approval in the U.S.

While it is certainly not ideal that I am unable to comfortably participate in many activities, I have hope that one day I will be able to embrace the warmth of the sun without having to worry about my disease taking over. I may have to live with EPP, but so far that hasn't stopped me from pursuing any of my dreams; I just have to spend a lot more time inside and in the shade than others. And hey, I'll still have a really nice complexion down the road when all of my sunbathing friends are covered in sunspots. I am also beyond blessed to have such great family and friends who try to understand my condition and often offer to join me in the shade.

Life in the shade isn't always so bad when you have great company.