“It is called hypophosphatasia.”
How to talk about HPP and what it means for you
Some people are amazing at offering support when something big happens—such as being diagnosed with a lifelong disease. Some people know just what to say and do.
But other people—even those who love you dearly—may not understand or may not know what to say. At best, they may offer advice that is not helpful. At worst, they can say things that are upsetting, such as
- “But you don’t look sick.”
- “You should try this new vitamin—it can’t hurt!”
- “I know just what you’re going through.” (Though they’ve never experienced anything like HPP)
These sorts of comments may be hard to hear—they may make you feel isolated and misunderstood. You know your friends and family love you—and that coworkers and acquaintances are trying to help—but it can feel like no one really understands what you are experiencing.
What to do?
Part of being your own advocate—of taking charge of your own health—is letting these people know how you are feeling and what you need—what is helpful and what is not. Many of these people want to be there for you. They just do not know how.
When speaking with family and friends
- Be honest about HPP: what it is and what it might mean for you. Because HPP is rare, many people know nothing about it. It can be helpful to tell those you love about the disease and about your symptoms
- Speak with your family about the fact that HPP is a genetic disorder, meaning it is passed down from your parents. It is possible that no one else in your family (parents and siblings, aunts, uncles, and cousins) has been diagnosed with HPP. But they could have it. That is why it is good for them to know more about it, what causes it, and common symptoms. That way, if they have or develop any signs or symptoms of the disease, they can tell their doctor
- Let people know what you need. It depends on the situation, but it may be good to let people know if their comments or actions are hurtful. Or, on the flip side, if there are things they can say or do that would be helpful
When speaking with your child’s school and teachers
- Make a health plan. HPP is a rare disease, so the people at your child’s school may not know anything about it. You can provide a written document that outlines your child’s needs. Include things such as
- Your child’s specific needs
- Medicines or any procedures required during the school day
- Possible problems that could arise and how to handle them
- Instructions on whom to contact in case of an emergency as well as your pediatrician’s name and number
- Tell the school about your child’s day-to-day needs. HPP can make walking difficult, so your son or daughter may need extra time to travel from class to class—or they might need to participate in alternative activities during recess and gym. You can make suggestions such as these and work with the school staff to figure out a plan for your child’s day-to-day activities
- You can help make your child’s school a safe place for him to learn. Have open and honest conversations about HPP with the school staff and teachers. You may also want to speak with your child’s teachers about if and how they should explain HPP to other children. What you share about HPP is a personal decision, but educating your child’s school staff and teachers may help school remain a safe place to learn and grow