As spring slips away and summer is within our grasp, our natural urge to enjoy the great outdoors intensifies. However, even limited sun exposure can be dangerous to ECD patients under some targeted-therapies. If you are being treated with a BRAF or MEK-inhibitor, or simply enjoy being outside in the summer, ensure that you are taking proper sun safety precautions.

Dermatologist, Stéphane Barete, MD, PhD, at ECD Care Center Pitié -Salpêtrière Hospital in Paris, spoke with patients at the 2019 ECD Patient and Family Gathering in Milan, Italy.
Dr. Barete explains, “With those being treated with vemurafenib, we have to prevent with extreme precaution to avoid sun. There are different reasons but the main ones is cancers; skin cancers, melanoma… Especially with vemurafenib, that reduce the threshold of UVA tolerance [as referring to the photo sensitivity of the skin].”

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Dr. Barete’s Sun Safety Suggestions:

Wear a minimum of 50 SPF sunscreen and reapply at least every two hours. Reapply after swimming or sweating. Don’t forget to apply to ears, face, and neck.

Wear sunscreen even on cloudy days! Especially during the summer.

Wear protective clothing, such as long sleeves/pants when possible to cover exposed skin.

Wear a hat to cover face and ears.

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Did you know?

The suns UV rays are the strongest between 10 AM and 4 PM!
Consider enjoying the outdoors in the early morning or late afternoon to avoid the stronger UV rays.

The UV Index forecast is issued daily by the National Weather Service and EPA!
Before making outdoor plans, consider checking the UV index levels for exposure category.

Sunglasses protect your eyes from UV rays!
Next time you are buying sunglasses, note that sunglasses blocking both UVA and UVB rays offer the best protection. Most sunglasses sold in the US meet this standard.

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Remember, if you are going to enjoy the great outdoors this summer, ensure that you are practicing sun safety!

*For more information about ECD and Skin Involvement:

Dr. Barete’s response to photo sensitivity question during Ask the Experts at the 2019 Patient and Family Gathering. The question/answer can be found at 44 min. mark of video. https://youtu.be/QcEVBl9bTpY

Skin Involvement – Stéphane Barete, MD, PhD ~ This video is an excerpt from the 7th Annual Erdheim-Chester Disease Global Alliance Patient and Family Gathering in Milan, Italy. Stéphane Barete, MD, PhD presents in the variations of skin involvement in ECD.
https://youtu.be/RrrQgZyoCrQ