Tips to help improve your mental outlook and ability to cope with your skin condition.

1.    Focus on what you can control. For example, finding a dermatologist who you trust and is willing to stay current with the latest research and clinical trials of new treatment regimens, keeping up with regular health visits, and staying healthy (by eating nutritious foods, getting enough sleep, not smoking). Don’t let the condition define you. Instead prioritize and learn to care for yourself emotionally and physically.

“My skin condition now plays a small role in my life. It’s almost like second nature.”
    -young adult with ichthyosis

2.    Learn about the disease and stay organized. Invest the time to find the best skin routine for you and know that regimens often need to be adjusted over time. Because this is a lifelong condition, try to maintain your medical records, including which treatments you’ve tried, if and how well they worked, as well as what triggers any flare-ups. Some people like to keep hard copies of their documents in a binder, while others prefer to make digital copies or access them through a secure online portal.

Be sure to write down any questions or concerns you have before each medical visit, and don’t shy away from talking about the psychosocial side of living with ichthyosis and how it impacts your day-to-day life or longer-term goals. There has been a shift in medicine to patient-centered care and shared decision-making that emphasizes the patient’s preferences and goals.

3.    Talk openly about your feelings. Many adults with ichthyosis share that as children and young adults they weren’t really asked about how the skin condition impacted their childhood, early friendships, school experience, and outlook on life. They often felt like it was a taboo topic, with some suffering in silence into adulthood. But you’ll feel better and gain the needed confidence to advocate for yourself or your child if you share your feelings and unique experiences.

“Talk about it. The more people who understand the condition and what it is, the less isolated and more empowered you’ll likely feel.”

4.    Find calming exercises that work for you. When you start to feel anxious and overwhelmed, try mindfulness exercises like meditation and yoga. Other strategies include:

• Deep belly breathing – Try lying in a relaxed and comfortable position. Breathe in slowly through your nose for 5 seconds filling your lower belly or abdomen (instead of your chest); notice your abdomen rising; hold your breath for 2 seconds; then slowly exhale through your mouth.
• Progressive muscle relaxation – This involves intentionally tensing or tightening and then relaxing one muscle group at a time working from your head to your toes or vice versa.
• Box Breathing: this simple technique is great to do alone or with children. Watch here.

5.    Build your village. It’s important to have a consistent and trusted support network of family, friends, and colleagues, especially other people who are affected by the condition.

It can be very helpful to talk with other people who live in your skin so to speak, to be able to share stories and tips for dealing with common challenges. Some parents say signing their kids up for activities or summer camp (Camp Discovery, Camp Wonder and Hole in the Wall Camp),  with children with other rare or chronic conditions (for example, wheelchair basketball), helps them understand that other kids are facing challenges too.

6.    Choose healthy foods and stay hydrated. Healthy eating is especially helpful for young children who burn more calories than their same-sized peers because of water loss through the skin. Because many people with ichthyosis avoid the sun, they are often vitamin D deficient. Ask if you need to take a daily supplement.

7.    Stay active and move your body. Physical activity is important for your mental and physical health. Find activities that you enjoy and are comfortable for you and don’t lead to overheating.  

8.    Consider seeing a mental health professional. If you think you could benefit from one-on-one therapy, ask your primary care doctor or dermatologist for a referral. Cognitive behavioral therapy can help you explore how your thoughts and feelings may affect your actions and outlook. This no-judgment zone lets you talk about what is bothering you in a safe space and come up with strategies to relieve stress and learn positive coping skills.

9.    Learn to say “no” to activities that add stress and “yes” to those that bring you joy, connection and sense of purpose. Volunteering, in particular, can have significant mental and physical health benefits. Some studies find that giving back can improve immune health and boost your body’s feel-good hormones too.

10.    Start a gratitude journal or jar. Rather than dwelling on what you can’t change or what’s difficult, focus on the positive things in your life. Write down something you are grateful for each day and place it in a cup or jar.

Additional tips for parents

Many of the above tips can apply in your role as a caregiver to a child with ichthyosis as well. It’s also important to be kind to yourself. It’s very difficult for young, expectant parents to suddenly see their newborn baby covered with a thick sheath of skin usually with no advanced warning. And the obstetrician and neonatal teams usually have little or no knowledge of how to treat it because it is so rare.

•    Reach out to other parents who have navigated this journey and who might be able to share advice

•    Bond with your baby – touch is extremely important now and over time

•    Apart from safety concerns (for example, keeping the child safe from extreme temperatures), try not to treat your child differently to their siblings

•    From a young age, boost your child’s sense of self-worth and ability to cope with, and grow from, life’s challenges. Don't be afraid to have your child advocate on their own behalf.

•    Middle school and high school can be rough for any child; be prepared that it may be even harder for your child

•    Give your child space to think and talk about their skin and validate their feelings. The hard truth is that many adults living with ichthyosis share stories of times when they felt their skin condition held them back. Helping your child learn how to self-advocate from a young age is a valuable and life-long skill

•    Help them find the words to explain their condition to other people in a way that normalizes it “It’s called ichthyosis, a skin condition I was born with that makes my skin really dry and scaly.”

•    Remember that negative thoughts are common and to be expected, but don’t let them take over – make sure your child knows he/she is loved and that their condition should not define them.  Learning to live with and grow beyond ichthyosis is a process

•    Help your child find healthy distractions and ways to build resilience – help them bounce forward through, not back from, setbacks so they can develop a positive, glass half full outlook.

•    Find your joy, your interests. Don't let ichthyosis keep you from trying something new. You may be able to make accomodations.

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