A Day in the Life with XP – Eddison and Nicola’s Story
Xeroderma Pigmentosum (XP) presents unique challenges, but for 14-year-old Eddison and his mum, Nicola, it’s a journey they’ve learned to navigate together. Here, they share their daily experiences, the hurdles they face, and the support they’ve found through Action for XP.
Daily Life with XP
Eddison:
"Every morning, I have to apply factor 50 sun cream, put on my protective face visor, gloves, and UV-safe clothing before I can leave the house. Throughout the day, I need to reapply sun cream every three hours and always wear my protective gear if I’m anywhere with UV exposure.
My home and school have been adapted with UV-safe lighting and window film to make sure it is safe for me. Every activity I take part in needs extra planning and adjustments to make it safe for me.
At School I have a 1-2-1 to make sure windows don't get opened near me, or unsafe lights are used around me. Sports can be challenging and for PE I have to wear adapted protective clothing.
It is hard for me to visit my friends or take part in hobbies as they are not usually in UV free spaces."
Nicola:
"XP affects every part of our daily routine. Our Home and car are adapted with UV filtering film on the windows, and all our lighting is sourced to ensure no UV is omitted. We have air conditioning throughout as we are unable to open windows which would otherwise be unbearable in SE England during the warmer months.
here our son went to school, his leisure, and holidays all require meticulous planning.
Opportunities for him to socialise with friends outside of our safe home are limited. Everything like haircuts, dentist appointments and shopping need detailed planning. Right down to the fact that if the doorbell rings, he can't even open the front door without having time to put his protective clothing on, or we can't wind down the car window at a ticket barrier.
XP affects everything from the smallest life activity to the biggest life event and everything in between."
Being Diagnosed with XP
Nicola:
"Our son was diagnosed with XP-D when he was just 12 months old after nine months of appointments, testing and uncertainty. When we first heard the diagnosis, we were devastated.
We had never heard of XP, and learning that he could never be exposed to daylight or most sources of artificial light was terrifying. We couldn't picture what sort of a life that would be.
There was no one local that we could connect with who understood what we were going through. Even our GP had never heard of the condition. The months that followed were incredibly stressful as we tried to reimagine what life would be like.
At the same time, we were expecting our second child, so discovering the genetic nature of XP made us even more anxious while waiting to find out if he was also affected, but testing at birth confirmed he was only a carrier and did not have XP.
As parents, we also felt considerable guilt of passing on such a rare life-limiting genetic condition without knowledge, but we had to focus on creating the safest possible life for Eddison."
Overcoming Challenges
Eddison:
"The hardest part about living with XP is getting hot and my visor fogging up in my protective clothing. Constantly having to adapt to different environments just to participate in daily life can be exhausting. Negative comments from others also make it difficult, making me feel different all the time.
However, I focus on what I can do and use my skills to achieve as much as possible. Being around my family and friends who support me makes a huge difference as they help me make anything possible."
Nicola:
"One of the biggest challenges is making sure Eddison isn’t isolated from his peers. Next is combatting stigmas and comments when outside the home, and the anxiety you have as a parent as they reach their teen years and want more independence.
We know that the outside world can be a cruel place, and we worry about him being put in danger or facing unpleasant interactions without us there to support and protect him. The ever-present worry surround the neurological impact of the disease is a great source of anxiety for us."
The Role of Action for XP
Eddison:
"Action for XP has supported us in so many ways. They provide my hats, gloves, and the special UV meter I use every day to check my surroundings. They also helped make my home and car UV-safe. I’ve had the chance to go on activity weekends with other families, which have been amazing.
I’ve also worked with them to raise awareness and was part of their teen comic project, where I got to connect with other kids my age."
Nicola:
"The support from Action for XP has been invaluable. They connected us with other families who truly understand what we’re going through, both online and at in-person events. They also provided crucial protective equipment, such as a UV visor, gloves, and a light meter, which Eddison uses every day.
Through their grant funding, we were able to install UV-filtering window film in our home and car to create a UV free and safe environment. These resources make a real difference in our daily lives."
The Strength of the XP Community
Eddison:
"Being part of the XP community makes me feel special. When I’m with other people who have XP, I don’t feel different, I feel like I belong."
Nicola:
"Finding the XP community has been a huge source of comfort for us. Having a sense that you are not alone and learning you are not the only ones going through this, in the XP community you can speak with others who truly understand.
We have spoken with other parents and adults living with XP who have helped us to better understand some of the emotional impacts of growing up with XP so we can be more proactive in supporting our son through the various life stages."
Advice for Anyone Newly Diagnosed and Their Families
Eddison:
"There is always a way around the challenges, and you should never stop trying to find those ways. Be creative and do everything you can!"
Nicola:
"You are not alone. Life can be so much more than you first think when you hear that diagnosis. Lastly, I would encourage anyone to reach out to the XP community and support group as they can help you."
Get Involved
Eddison and Nicola’s story highlights the importance of support, adaptation, and community.
We'd love to hear from you! If you're interested in sharing your story about living with XP, please email us at [email protected].
We will send you the questions and guide you through the process of sharing your story with us.
Eddison:
"Every morning, I have to apply factor 50 sun cream, put on my protective face visor, gloves, and UV-safe clothing before I can leave the house. Throughout the day, I need to reapply sun cream every three hours and always wear my protective gear if I’m anywhere with UV exposure.
My home and school have been adapted with UV-safe lighting and window film to make sure it is safe for me. Every activity I take part in needs extra planning and adjustments to make it safe for me.
At School I have a 1-2-1 to make sure windows don't get opened near me, or unsafe lights are used around me. Sports can be challenging and for PE I have to wear adapted protective clothing.
It is hard for me to visit my friends or take part in hobbies as they are not usually in UV free spaces."
Nicola:
"XP affects every part of our daily routine. Our Home and car are adapted with UV filtering film on the windows, and all our lighting is sourced to ensure no UV is omitted. We have air conditioning throughout as we are unable to open windows which would otherwise be unbearable in SE England during the warmer months.
here our son went to school, his leisure, and holidays all require meticulous planning.
Opportunities for him to socialise with friends outside of our safe home are limited. Everything like haircuts, dentist appointments and shopping need detailed planning. Right down to the fact that if the doorbell rings, he can't even open the front door without having time to put his protective clothing on, or we can't wind down the car window at a ticket barrier.
XP affects everything from the smallest life activity to the biggest life event and everything in between."
Being Diagnosed with XP
Nicola:
"Our son was diagnosed with XP-D when he was just 12 months old after nine months of appointments, testing and uncertainty. When we first heard the diagnosis, we were devastated.
We had never heard of XP, and learning that he could never be exposed to daylight or most sources of artificial light was terrifying. We couldn't picture what sort of a life that would be.
There was no one local that we could connect with who understood what we were going through. Even our GP had never heard of the condition. The months that followed were incredibly stressful as we tried to reimagine what life would be like.
At the same time, we were expecting our second child, so discovering the genetic nature of XP made us even more anxious while waiting to find out if he was also affected, but testing at birth confirmed he was only a carrier and did not have XP.
As parents, we also felt considerable guilt of passing on such a rare life-limiting genetic condition without knowledge, but we had to focus on creating the safest possible life for Eddison."
Overcoming Challenges
Eddison:
"The hardest part about living with XP is getting hot and my visor fogging up in my protective clothing. Constantly having to adapt to different environments just to participate in daily life can be exhausting. Negative comments from others also make it difficult, making me feel different all the time.
However, I focus on what I can do and use my skills to achieve as much as possible. Being around my family and friends who support me makes a huge difference as they help me make anything possible."
Nicola:
"One of the biggest challenges is making sure Eddison isn’t isolated from his peers. Next is combatting stigmas and comments when outside the home, and the anxiety you have as a parent as they reach their teen years and want more independence.
We know that the outside world can be a cruel place, and we worry about him being put in danger or facing unpleasant interactions without us there to support and protect him. The ever-present worry surround the neurological impact of the disease is a great source of anxiety for us."
The Role of Action for XP
Eddison:
"Action for XP has supported us in so many ways. They provide my hats, gloves, and the special UV meter I use every day to check my surroundings. They also helped make my home and car UV-safe. I’ve had the chance to go on activity weekends with other families, which have been amazing.
I’ve also worked with them to raise awareness and was part of their teen comic project, where I got to connect with other kids my age."
Nicola:
"The support from Action for XP has been invaluable. They connected us with other families who truly understand what we’re going through, both online and at in-person events. They also provided crucial protective equipment, such as a UV visor, gloves, and a light meter, which Eddison uses every day.
Through their grant funding, we were able to install UV-filtering window film in our home and car to create a UV free and safe environment. These resources make a real difference in our daily lives."
The Strength of the XP Community
Eddison:
"Being part of the XP community makes me feel special. When I’m with other people who have XP, I don’t feel different, I feel like I belong."
Nicola:
"Finding the XP community has been a huge source of comfort for us. Having a sense that you are not alone and learning you are not the only ones going through this, in the XP community you can speak with others who truly understand.
We have spoken with other parents and adults living with XP who have helped us to better understand some of the emotional impacts of growing up with XP so we can be more proactive in supporting our son through the various life stages."
Advice for Anyone Newly Diagnosed and Their Families
Eddison:
"There is always a way around the challenges, and you should never stop trying to find those ways. Be creative and do everything you can!"
Nicola:
"You are not alone. Life can be so much more than you first think when you hear that diagnosis. Lastly, I would encourage anyone to reach out to the XP community and support group as they can help you."
Get Involved
Eddison and Nicola’s story highlights the importance of support, adaptation, and community.
We'd love to hear from you! If you're interested in sharing your story about living with XP, please email us at [email protected].
We will send you the questions and guide you through the process of sharing your story with us.