What is it like to have XP?

It means that I do not go outside in daylight. When I have to go out (to school or the doctors), I am slathered with sunscreen, and completely cover up with long pants, long sleeved shirts, gloves, hats, sunglasses and a face shield to block the UV light. Literally, any exposed skin needs to be protected or I risk getting extremely painful third degree burns. Aside from the blistering pain, the burns take a long time to heal and put me at higher risk for skin and eye cancers. Playing outside means going out at night, usually when my friends are home asleep. 

Frequently Asked Questions

 

Is there a cure?

Not yet. We hope that with increased funding, there will be a cure soon. There are a few drugs in clinical trials in the United States and researchers in France are working on a way to carry missing enzymes to XP cells through a virus and other genetic manipulation. The XP Society works closely with our scientific advisory board and posts updates regularly on this site.

The most important thing is to continue to build awareness and increase funding for the quality of life of XP people until a cure is found.

What is the most important thing for new parents to know about their child's diagnosis?

The most important thing to know is that you are not alone. There are families all over the world who are living with XP or some other type of photosensitivity. Sadly with the continued depletion of the ozone, more people will be susceptible to severe light-sensitivity.  Still, the condition is unusual enough, that you’ll need to be prepared to talk about it and educate family members, friends, caregivers and teachers to help protect your child from the harmful and painful UV rays. The Camp Sundown community understands and is here to offer a listening ear; helpful suggestions and friendship. Like us on FacebookGet connected to the Camp Sundown community for support. We are all in this together.

 

Protection is key. Ultraviolet window screens and curtains can help minimize the amount of UV light inside your home. Also, remove any UV light sources like light bulbs from your home, classrooms, etc.

 

Finally, be vigilant about any bumps, lumps or abnormal growths called “neoplasms.” People with XP are highly susceptible to different types of skin cancers. Early detection and removal is vital for long-term health. 

If you think your child has XP, what should you ask your doctor?

Yes. Don’t hold back questions because you feel silly, or because you don’t want to sound crazy.  You are your child’s advocate. In medical school, doctors are taught if they hear “clop, clop” out of a window, to look for a horse, not a zebra. XP is a zebra. If your child is getting extreme sunburns, painful blisters or other intense reaction to the sun, it could be XP or some other type of photosensitivity. You must be a loud and constant advocate for your child. The earlier you get a good diagnosis, the sooner the protection begins, the better long-term for your child. Click here for signs/symptoms of XP.

My child doesn't have XP, but they have another UV-sensitive disease. Can we come to Camp Sundown?

Absolutely. Camp Sundown is for families whose children have a life-threatening UV-sensitivity that makes a “normal” daytime, outdoor summer camp impossible.

 

We have campers with porphyria, solar urticaria, albinism, achromatopsia, vitiligo and conditions other than XP that make summers with their long, sunny days particularly burdensome for children who can’t be in daylight. Please check here for dates and registration materials.

How can I offer my child the best protection from the sun or other UV exposure?

Start by minimizing any kind of exposure. Look into getting UV protective film on your car and home windows. Find clothing that gives your child maximum coverage. Apply sunscreen (even indoors) every couple hours on exposed skin. Buy extra sunglasses, hats, umbrellas, anything that will give them instant shade and reduce reflective light exposure. Talk with your doctor about getting handicapped parking for your car so that you can always be close to the door. Click here for additional tips and suggestions. There are a number of products that make life easier, please visit our partners page for listings.  

I don't want my child to be treated differently. Who should I tell about the diagnosis?

Do you have a friend who can do skywriting or pull banners? Because you're going to want to tell everyone. The most important thing to remember is that each of us is created differently and everyone has something that makes their life challenging. When explaining it to people for the first time, it’s easiest to make a connection to common allergies, “Some kids have seasonal allergies, some kids have life-threatening nut allergies, our child has a sun problem. Exposure to UV light that can hurt them very badly so we need to take precautions that keep them safe.”

 

Having XP is more obvious because of the protective clothing essential to keep them safe from the harmful UV light. Again, you are your child’s best advocate for their unique needs.

 

For a young child, it is all about education. Teach everyone, the child, other family, friends, teachers, classmates, even the medical community -- anyone who has the opportunity to care for or be with  your child --- has a need and responsibility to know how best to care for them. We have often found that going to the child’s classroom and educating from the child level up works wonders. People, especially children like to be helpful. If they understand the situation, you’ll find a lot of people who want to help. 

How do I tell people my child's diagnosis with XP?

It's a lot easier today than at any other time to talk about XP. Food allergies can be life threatening; but are now so commonplace that "nut-free zones" are in almost every school and menu. The easiest way is to explain to people that your child has an allergy to the UV light and even smallest amount of sunshine or UV light can hurt them very badly. It is very important to educate caregivers, teachers, family and friends that your child has a life-threatening sensitivity to UV light and you need their help to protect your child it. 

Should I tell the school?

Yes. It is extremely important to meet with your school's principal and teachers and discuss getting an Individual Education Plan (IEP) for your child. You will want to get in writing that your child will not be seated near the windows or any UV light source and/or that windows are tinted to block out external exposure. If field trips are possible, special considerations are to be taken for travel and the field site itself. Work with the administration for drills, fire and other emergency evacuation plans for safe shelter. Discuss how valuable playtime is and what you r child will be doing while others are outside playing. Work with your doctor and your teachers on making sure that there is a safe learning environment at school or that provisions are made for education at home. Also, enlist your children's classmates in helping. Children like to be helpful and they like to know what is going on. Being straightforward and explaining about your child's condition will help to foster good relationships with their friends, and hopefully will prevent some curious stares or chatter about protective clothing and definitely help in your child’s health and well-being.

What are clinical trials?

Clinical trials are supervised medical research studies where patients can apply for access to new treatments and contribute to medical research. Because research gathered during this phase is used to show the drug’s efficacy or effectiveness, there are strict guidelines about who can participate. Patients must work with their doctors to get in to a clinical trial. If selected, some patients will be given the drug or medicine that is being studied and others will receive a placebo (a substance that has no therapeutic effect.) This helps researchers find out how well the drug may work. 

It seems like doctors will test for everything else first. Is there a way to expedite the diagnosis?

Not really. Since XP is so very rare, it is most likely your child has another condition that exhibits sun sensitivity as a symptom. Start to document when your child has been affected from photosensitivity. Make a list of all of their ailments from most to least common. Do they get bumps, scaling or oozing lesions from minimal exposure? Have they recently been taking some kind of medication or herbal treatments? (Different types of antibiotics, painkillers and herbal remedies can give extreme photosensitivity as a side effect.)

 

Testing for XP is also not easy, as it is no longer done in the US. Please contact us for more information about testing, including prenatal.

 

ADDRESS

437 Snydertown Road

Craryville, NY 12521, USA

 

Telephone: (518) 929-2174

 

Email: xps@xps.org

  • Facebook App Icon
  • YouTube Classic

Getting a rare disease diagnosis is terrifying for patients and their parents. You are not alone. We are here to support you and help you find the light in the darkness. The XP Society is a unique to the world program for children and families who can never be in daylight. We help provide the XP family support, information and the informative foundation on which to build a healthy and happy quality of life.

Subscribe for Updates

© 2015 by Xeroderma Pigmentosum Society