What factors can lead to a hypophosphatasia (HPP) diagnosis in adults?
When my twin and I were finally diagnosed with HPP it felt validating, it felt like we had an answer to a mystery. It felt like we were right and there was a victory in following our hunches."
SUZANNE, LIVING WITH HPP
If you’ve lived a lifetime with unexplained, seemingly disconnected symptoms, it is time to talk to a doctor about getting a diagnosis. Ask your doctor for a simple blood test to determine if you have HPP.
It takes one or more HPP symptoms + persistently low age- and sex-adjusted alkaline phosphatase (ALP).
Persistently low
Age- and sex-adjusted alp
+
One or more HPP
symptoms
=
May be enough for your
doctor to diagnose HPP
If you or your doctor suspects HPP based on your symptoms and history,
a blood test to check your ALP levels can confirm the diagnosis. Check
with your doctor for more information, only a licensed healthcare professional
can diagnose HPP.*
*After your doctor has ruled out other causes of low ALP
LEARN MORE ABOUT ALPSeek answers. Take action.
Are you tired of your unexplained symptoms? It’s not too late to make a change.
Know your symptoms.
HPP is difficult to diagnose in adults because of shared symptoms with more common bone or rheumatologic diseases, like arthritis. But while it may seem easier to brush off or minimize your pain—especially if you’ve normalized it over your lifetime—it’s never too late to be proactive. Don’t wait another minute. Have a conversation with your doctor.
CHECK YOUR SYMPTOMS
Need help finding a doctor who understands HPP?
If you’ve been struggling with symptoms you don’t understand, speaking to a healthcare provider who understands may help. Visit the doctor finder to learn more about finding an HPP specialist.
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THE DOCTOR FINDERGet the Help You Deserve.
When going to the doctor, bring your medical records with you (if possible). Or, talk to your parents, caregiver, or older siblings to go over events and symptoms from your childhood.
Medical History or Personal Records
During your life, have you experienced unexplained fractures? Or premature tooth loss with the root intact? Every person’s medical history is unique and can be the key to unlocking an accurate diagnosis. It may be helpful to discuss or share symptoms with family members, especially if symptoms were present during childhood. Tracking your symptoms over time and sharing them with your doctor may lead to an earlier diagnosis.
Significant Medical Events
Did you experience any traumatic injuries during childhood? Any major medical milestones to note? Consult a parent or guardian, and make sure to mention these significant events to your doctor.
Questions
Write down a list of questions you have and ask them! The best way
to get answers about your symptoms—and potential diagnosis—is to
have an open, honest conversation with your doctor.
The Hypophosphatasia
Journal can be used to track symptoms, appointments, and more.
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