Living with HPP-What to Expect

Personal Experiences From Patients

Hypophosphatasia is a disease that affects the whole family, especially when a child is diagnosed. Whether you're a parent, sibling or other family member, your support and understanding can make all the difference. Are you worried about medical care and costs, or how to manage HPP at school or work? We provide information and resources to help every adult, child and family adjust to life with HPP.

Like most people living with HPP, we learn a lot from asking questions from others suffering with this disease. Below is a list of thing you may expect or are experiencing. If you would like to add to this list please email us. Make sure you read "A day in the life" these story's will give you what living with HPP is like.

Adults

(Information coming from patients)

• Fractures in both ankles and feet.
• Fractures in other areas.
• Loss of muscle strength.
• Begin to waddle when you walk.
• Pain in feet, ankles, legs, wrists, elbows knees, shoulders, etc..
• All types of pain: from sharp to throbbing and dull to the worst you have every felt.
• Fatigue after walking a small amount. Needing to rest and your nights are miserable.
• Leaving early to events, work etc… because it take you longer to walk any distance.
• Need assistance with things I use to do by myself.
• Nights are the worst, sleeping is almost impossible, can't lay on either side without pain.
• Emotions are always changing, crying is also a part of this.
• Some good days, some bad days, most are filled with pain, then there are the days that you are so sick and the pain is so bad.
• Made changes in my home.
• Pain so bad it will make you cry.
• How you feel can change in a second. Bad to good. Great, to the worst pain you have ever had.
• Some days walking is not even an option.
• Joints becoming hot to the touch and painful
• Strength loss, hard to open even bottle and jar tops.
• Needing the use of wheelchair and/or walking device (cane, crutches, walker)
• Headaches, migraines.

Children and Infants

(Information coming from parents)

• Soft Skull Bones
• Infants born with short limbs
• Abnormal chest shape
• Change in skeleton
• Bowed-legs
• Problems breathing
• Vomiting
• Knock knees
• Wrist joints enlarged
• Early tooth loss, baby teeth fall out earlier than normal
• Bone and muscle pain
• Difficulty gaining weight
• Headaches, migraines