Taking care of signs and symptoms of hypophosphatasia (HPP)

Living with a lifelong disease such as HPP can be overwhelming. There are several options you can consider to take care of yourself and minimize the impact HPP has on your life, including

Find doctors you trust.

One of the most important actions you can take if you have a rare, lifelong disease such as HPP is to choose the most suitable doctor. People with HPP often see multiple doctors to help manage their disease and their symptoms. Your HPP care team may include your primary care doctor as well as different specialists depending on the symptoms you have. Specialists may include

  • An endocrinologist (for hormone and growth issues)
  • A rheumatologist (for joint issues)
  • An orthopedist or orthopedic surgeon (for bone issues)
  • A nephrologist (for kidney issues)
  • A geneticist (to help people with HPP make decisions about family planning)

Finding the most suitable doctor can take time and patience. It is OK to ask doctors all your important questions until you find a doctor you are comfortable with. To manage HPP a suitable doctor should

  • Be knowledgeable about HPP or be willing to research HPP
  • Ask questions about your symptoms and disease history, and really listen to your answers
  • Ask about your concerns and be open to you bringing in information you think may help
  • Answer your questions in a way you can understand
  • Be willing to speak with your family to help them better understand HPP and what you may be experiencing

Take care of symptoms.

There are ways in which doctors can help address the many signs and symptoms people with HPP experience. Some of the more common options are listed below. Many other options exist, though, so be sure to speak with your doctors about what specifically is happening with you.

Some things that can be done to address common symptoms:

  • Taking care of your pain. Your doctors may give you different medicines based on pain level. Pain specialists can also help figure out the right combination of therapies
  • Strengthening your bones. Low-impact, doctor-supervised exercise may improve bone health. Specialized surgery for people with HPP can help heal a fracture or bone that has not grown as it should
  • Getting around. Braces, splints, canes, walkers, and wheelchairs can all help

Get the support you need.

Living with a lifelong condition such as HPP can take an emotional toll on individuals and families. Addressing psychological health—in addition to physical health—is important. Your primary care doctor may be able to recommend a suitable counselor or support group in your area. In addition, online communities can be very valuable in providing support for those living with HPP.

Consider a clinical trial.

Clinical trials look at potential treatments that are not yet approved for widespread use. Your doctor can help you determine if there are clinical trials in your area that are appropriate for you to enroll in. In the US, you can also find locations of open clinical trials online at http://www.clinicaltrials.gov. Clinical trials are not right for everyone, so speak with your doctor about whether or not a clinical trial may be something for you to consider.