Children growing up with hypophosphatasia (HPP) face many challenges. We’ve got some tips to make the day-to-day routine a little easier for you and your child.
Whether your child has been recently diagnosed with HPP or you find yourself struggling with the daily challenges that come with your child’s HPP, it can be overwhelming. A parent can often feel helpless or confused about what steps should be taken next. The most important steps on the road to feeling empowered are to educate yourself about HPP and advocate for your child. You know more about your child’s health than anyone else. Since HPP is a rare and lifelong disease, it’s essential for you to take an active role in your child’s healthcare as early as possible.
Choosing the right doctor can be one of the most important decisions you will make. And children with HPP often need multiple doctors to manage their symptoms and their disease. Your healthcare team may include your primary care doctor and several other specialists, depending on the symptoms your child experiences. Finding the right doctors can take time and patience, but it’s important to not rush through this process. Ask questions until you find a doctor who suits your needs.
To help with pain and physical limitations, your doctors may prescribe different medicines and therapies based on your child’s symptoms. Specialists in pain management can help determine the most effective combinations of medicine to help make the bad times more comfortable. Physical therapists may be able to supervise low-impact exercises to improve bone health. And surgery performed by an HPP specialist may be able to help heal your child’s bones or fractures. Other devices like braces, splints, canes, walkers, and wheelchairs can all help your child get around more efficiently.
Getting the support you need means much more than finding the right doctor and seeking the right physical treatments for your child. Dealing with the impact of a chronic disease can emotionally drain even the most dedicated parent or caregiver. Sometimes you may feel completely alone, but you’re not. There are other people in similar situations, and there are advocacy organizations, Facebook groups, and online communities that can offer you valuable support and help you keep a sense of balance in your life. By sharing your story and reaching out to others, you can make connections with people who understand what you’re going through and help you cope with your child’s HPP.
If you’re looking for more information about children with HPP or how to cope with the effects of HPP, talk with your healthcare professionals and keep exploring our website. Our articles and patient stories are continuously being updated. If you want to continue your search somewhere else, we can help with that too.