Here are 10 practical ideas to help make daily life with XLH that little bit easier! Why not try some today? Here goes…
Being diagnosed with XLH – or any long-term condition – can feel overwhelming and leave you worried about what your life will be like. But we have some useful tips to help you control your life with XLH, rather than let it control you.
1. Put your best foot forward
Yes, we're talking about footwear! While you're probably not going to be donning skyscraper heels for your next night out, it is possible to dress your feet fashionably while staying comfortable.
Trainers are always in fashion and there are so many great styles to choose from. When trainers just won't cut it, flat shoes with a substantial sole and ankle boots are great if you're going to be on your feet a lot. If you can, try to choose styles with laces or straps as this will help keep the shoe or sandal on your foot and offer extra support, which makes a huge difference on long days. Some people may also require an orthotic support.
Tips for getting shoes on and off
While shoes that have laces or straps may be good for the extra support they can provide, some of you may find it difficult to bend down to fasten shoes or to grip laces and straps. We take our shoes on and off several times a day, which means this simple thing can become a big stress. But there are ways to make it easier.
You may wish to swap your standard laces for elastic laces which stay laced up, turning a shoe with laces into a more supportive slip-on shoe. You may also wish to try using shoelace anchors, which eliminate the tying action. There are lots of different options and styles available.
Meanwhile, uncomfortable bending and reaching can be further avoided with the help of long-handled shoehorns and stocking or tights aids.
2. Remember, petite clothing comes in all sizes!
Many people with XLH find that they are shorter than their peers. If you're on the short side, finding clothes that flatter you can be challenging. The good news is, if you're female, there are lots of online shops that stock petite clothing ranges, in all dress sizes so you don't need to be slim.
3. Make time to care for your teeth
As XLH can affect your teeth, it's important you follow a thorough dental hygiene routine – ask your own dentist about what that means for you.
Even perfect dental hygiene won't in itself solve dental problems that can be part of XLH. However, taking good care of your teeth will give them the best chance. Make sure you see a dentist regularly and tell them about your XLH – even if you're not on any treatment for it at the moment – so they're able to make recommendations.
4. Try this handy home aid
A folding-step stool is a must-have around the house for reaching and doing chores, especially if you have a condition that has affected your growth like XLH.
5. Find out if work can support you
The world of work can be overwhelming if you're dealing with health worries as well, and while there is no obligation for you to tell an employer about your medical history, it might be better for you if you do.
Lots of workplaces will have provisions in place to help their employees, for example desk assessments or an occupational health specialist. You may need to let a prospective employer know before an interview, for example if you need access to a lift.
6. Share your story with friends and family
Tell those around you – your friends, partners, and family members who don’t have XLH themselves – about your condition. When starting new relationships and friendships you may be worried about the effects that XLH and surgery have had on you and your body, including scarring, physical limitations, tiredness and pain. You might be surprised at how understanding others are and how they can support you.
7. Pace yourself and ask for help
Having a happy and organized home life might seem like a distant dream, especially if you have children or elderly parents to look after, but by sharing the load with family and friends you can feel content while you avoid doing too much.
Pacing yourself on household chores will help – for example spreading the cleaning over a few days, rather than trying to get it out of the way in one go – and getting family and friends to help out where they can will make a world of difference.
Make the most of pain-free days
Making the most of the days when you're not in pain or feeling fatigued – for example by offering to help others – means you can take advantage of your good deeds and ask them to help you out on your bad days. If other members of your family have XLH too they'll understand what a good idea it is to share the energy around!
Plan downtime with the kids
For parents, you'll know that looking after children can be exhausting, even if you're feeling great, so make sure you've got a back-up plan for seated play or a film to watch for the days when you're not.
8. When it comes to holidays, prepare!
When you're on holiday, make sure you don't overdo it. Book in rest days where you take a trip to the beach or sit by the pool and make sure you're not spending the whole time trekking around museums.
If there's a language barrier and there’s a chance you might need a pharmacy, take plenty of your meds and some extra painkillers in your luggage.
What you can take on a plane depends on the airline and where you're flying to, so you will need to look into this with your specialist doctor as you're planning your trip. Usually information about taking medicine abroad and other useful travel tips can be found on local government websites.
9. Let apps and journals help you remember stuff!
Remembering to take medicine at the right time each day is a struggle, so set alarms on your phone as a reminder or use some phone apps to help you.
There can be a lot of time between appointments, and you might be seeing a lot of different specialists so keep a notebook on hand so every time something crops up (that's non-urgent) you can jot it down.
Don't forget non-emergency numbers such as 111 in the UK, 116117 in Europe for things that occur outside working hours.
Never put off going to an emergency department at a hospital if you need urgent care.
10. Talk to your healthcare team!
There's still a lot to be learned about XLH, and no one is in a better position to talk about it than those who are living with it. Keeping a record of your daily activities and your symptoms as they crop up will help your healthcare team work out how best to treat you and it could be helpful for other patients too. Useful things to note down are what you get up to, what symptoms you deal with at different times of the day, how you are feeling and your general mood.