Heather R.’s HPP Journey

My name is Heather R. I am a 54 year old, white female, married with twin boys, age 24. I was adopted at 3 months old and was approximately age 3 when I bumped my mouth on the jungle gym and lost my 4 upper and 4 lower baby teeth. I was taken to Cedar Sinai (or Mount Sinai) Hospital in New York City where I was diagnosed with HPP in approximately 1965.

I continued through life with minimal problems. I had some gum problems but no broken bones or weakness. I was a cheerleader for many years during elementary school and was on the gymnastics team my first two years of high school. I also swam, played softball and participated in all physical activities at school. My adult teeth came in fairly strong but I did require braces.

My first break was in October of 1991. I was pregnant at the time with my twin boys. I did not carry my twins to term and they were born in June of 1992 (approximately 5 weeks early). Even at that time, I did not suffer any major symptoms and I led a very normal life.

After another break in approximately 1997, the problems got worse. I started having issues with the positioning of my toes and my gum problems returned. My dental checkups showed gum disease but no bone loss.

Since approximately 2011, I have had four foot surgeries and four toe joint implants inserted to correct the toe positions. I have also suffered from numerous micro fractures in both of my feet which have required the use of a bone stimulator to help with healing. I had a tooth removed from the area that was showing the worst signs of the gum disease. The pain I have endured throughout the past 8 years or so has been excruciating. In addition to the pain in my feet, I began to walk with a limp which caused a secondary scoliosis; therefore, back pain as well. Most recently (for approximately the past year or so), the muscles in my legs were weak and painful, causing me to become disabled in many ways. In addition, the chronic fatigue was interfering with my quality of life and the fatigue from the pain only made that worse.

Because I didn’t associate any of this with HPP at the time, I accepted that I would live in pain, be disabled and chronically fatigued for the rest of my life. I do believe this has caused problems in my marriage as well as my social life and with my emotional feelings.

In 2013, I was referred to Endocrinologist, Dr. Aimee Shu at Stanford Hospital. At that time, there was no treatment for HPP so, after my one visit, I did not return …. until late 2016.

Stumbling across the HPP Facebook Group was a God send. With encouragement and a lot of information (some that seems to be a different language for me), I returned to Dr. Shu. She, as well as the HPP Facebook group, opened my eyes to Strensiq™ and the possible hope that I may not have to live like this for the rest of my life. It also opened my eyes to the various levels of severity that HPP patients have. I have watched videos of adorable, little children that are fighting the HPP fight and also those who are winning the fight with the help of Strensiq™. It has truly made me cry. I feel blessed to have gone so many years without experiencing what some of the darling little ones are going through. AND, now, I feel even more blessed …

I began Strensiq™ on February 13, 2017. Currently, the pain in my feet has gone from a 12 to a 2 on most days (on a scale of 1-10), the pain in my back is gone because I don’t limp anymore, my legs feel stronger and free of pain and my energy level has improved. I thank GOD for all that has been presented to me in the past months … the medication, the love and support of such an amazing group on Facebook, the education and knowledge of my OneSource/Alexion team, Panther pharmacists and my medical practitioners. One of the greatest blessings over the past months is the HOPE that, although there is no cure, I am going to kick HPP’s butt and not the other way around.


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