#EverydayEB P2P Tips: Sports & Active Living
Published on April 3, 2024
Find your #EverydayEB Peer-to-Peer Tips on Sports & Active Living here!
We’ve gathered suggestions across all age groups and EB types. Each suggestion is presented as a quote from the contributor. We encourage our readers to join the conversation and contribute your own suggestions in the comments section at the bottom of the post. Now, let’s dive in!
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Sports Gear Recommendations
- Comfortable fitting sneakers and socks
- Towel or blanket for stretching
- Ointment for reducing friction
- Carry a wound-care kit in case of injury
- Yoga pants (stretchy, comfortable, easy to put on and take off)
- Silipos Gel pads (for elbows, knees, and shins, providing protection during activities)
- Long sleeve clothes (to protect skin, wrapped with thin bandages so equipment does not dig into skin and cause friction)
- Batting gloves (for baseball)
- Soft yoga mat
- Sneakers that do not give you blisters, modified with metal pieces glued on (for tap dance)
- Well fit boots, where your feet don't move (for skiing)
- Leather handlebar grips (for bike riding)
Favorite Physical Activity/Sports
Dancing
- "I like to dance! As a child, I trained in a preprofessional company to be a dancer. Although I left the professional route, I still enjoy dancing in all styles (ballet, tap, jazz, hip-hop). As an adult, taking dance exercise classes with friends is a fun way to stay healthy and express myself. However, due to my EB, I am unable to wear pointe shoes and I participated in pointe classes in flats (essentially as an extra ballet class). I will admit to sustaining injuries in dance, but it was significantly less than in other sports since it is not a contact sport and the movement is often planned in advance. I was able to previously take gymnastics courses where I focused on tumbling (bar and beam were off the table due to the friction and constant impact). I would recommend wearing leggings instead of tights if dance classes allow it as tights can get stuck to open wounds. There is also an issue of the level of bandaging - too many layers will limit movement and cause pain at the joints when bent. It is about finding a healthy balance that protects the skin, but allows enough movement to participate. Open and honest communication with dance teachers is also essential as most will allow you to complete a modified version of routines that is safer and less likely to cause injury. Different styles of dance (e.g. jazz, hip-hop, contemporary, some types of cultural dances) may also put less stress on the feet compared to other styles (e.g. pointe, tap)." (RDEB)
- "My daughter danced for 11 years competitively." (RDEB)
Walking
- "I personally like to walk and stretch. Having scaring tissue you have to stretch it as much as possible, cause otherwise the skin becomes very stiff and painful to move around. So stretching and walking really helps me with that issue." (DEB)
- "Mine is walking. For those EB individuals who can walk, I find a good walk can address so many health issues. For one, it's good for you physically and walking is a low impact exercise so less stress on the body. Two, walking is good for you mentally. It relieves the mind of stress so u are more relaxed as well a good walk combined with fresh air is good for sleep." (DDEB)
- "Going for hobbies that require simple movement - even walking is fine. Exercise only when you can." (EB Type Unknown)
Swimming
- "Growing up with EBS my sister and I loved to swim. She also has EBS and turned her love of swimming into a career for most of her life. She became a PE teacher and swim coach!" (EBS)
- "I really do not do any sports and if I do it usually is in the winter; in the summer I would rather hang by the pool." (EBS)
Yoga
- "Low impact, non friction sports like yoga and pilates are great! Even on the days I can't really stand or put pressure into my hands or feet it allows me movement and let's me reconnect with my body. That said, knowing the days when it's time to relax and recover and not push into exercise is vital too!" (EB Type Unknown)
- "I enjoy yoga and swimming. They are gentle enough for my skin." (EB Type Unknown)
Playing with Pets!
- "Playing with my pets is one way I stay active. Me and my kitty like to run around the house and my dog loves when I throw her toy and dance with her." (RDEB)
Training Insights
- "You can train your legs by just sitting somewhere and swinging them." (RDEB)
- "Loose clothing, pat dry when sweating. Comfortable fitting sneakers and socks." (EBS)
- "Yoga mats may not always be the best option for stretching since they can cause friction when moving. A towel or blanket may be better for the skin. As with all exercise, remember to stay hydrated, eat beforehand, and carry a wound-care kit to any sessions in case of injury." (DDEB)
- "Always know your limits. And listen to your body! Your body will never steer you wrong. It’s okay to push a little, but it’s always super important not to push past your limits because you’re the one that has to deal with the pain and the injuries that can happen when you overdo it. I speak from experience." (DEB)
- "Yoga and stairstep exercises indoors - no shoes required!" (EBS)
- "No training techniques. For my feet, I coated my feet with Vaseline, wore a very thin sock, then wore a thicker sock over the thin sock. It did help on the friction." (EBS)
- "I've found stress contributes to blister development. If I'm stressed, blisters form easily; if relaxed, I can go without. Life stress, work, relationships, and physical activity can trigger blistering. Though not athletic, I've learned to manage by keeping activity light and knowing my limits." (EBS)
Thank you to everyone who generously shared their insights! Your recommendations will help others facing similar challenges.