Hypophosphatasia Awareness Day and Our Soft Bones Family

Oct 30, 2016

 

     Happy Hypophosphatasia Awareness Day Oct 30,2016 ! I first heard the word Hypophsphatasia a couple of years after my husband and I got married. He had a wrist swell up and the X-rays made the Dr think he possibly had cancer! What?!?!?! No he just had Hypophosphatasia. Here is a bit of information from the Soft Bones website 

My husband Dave! A little guy with HPP!

What Is HPP?

HPP is a condition that affects healthy development of bones and teeth, making bones softer and more likely to fracture. People who have HPP have trouble making an enzyme called alkaline phosphatase, or ALP. Without this important ALP enzyme, certain chemicals build-up and prevent calcium and phosphorus from binding together and depositing in the bones. As a result, bones can become soft, curved and fragile, and teeth may become loose or fall out prematurely.For more information, continue reading What Is HPP.

     

My husband Dave. One of my HPP heroes! 

As my husband started his journey as an infant, his Mom saw the value of communicating with doctors, getting treatment for his symptoms and continuing to search for a diagnosis. She was willing to do whatever it took. She wrote to physicians about David's case and fortunately they listened. She must have been surrounded by talented doctors because in the 1960's not many were diagnosed with hypophosphatasia (HPP). They just didn't know much about it or how to treat it. Early on in his life, he was misdiagnosed with cystic fibrosis and his Mom supported that cause through patient advocacy and fundraisers. She still had the awareness pins when she got her upgrade and went to heaven. 

Little did I know how much all this would mean until years later when Dave's wrist flared up. I told Dave that day that I was on a mission to find someone who could help him. Many years later I did, in Canada! Yes, the journey first took me to Canada through a website and a Yahoo group. Through that small but mighty group, I met Deborah Fowler who started Soft Bones. Years before, I had found a group that dealt with many disorders that impact children, including HPP.  I emailed them even though my husband was an adult, but I never received an answer. 

                                               

                                           Deborah Fowler founder and President of Soft Bones

Shortly after, Soft Bones emerged and covered a full spectrum of support for HPP patients, reaching out to prenatal hpp babies, the oldest adults, as well as caregivers. I don't know what Deborah thinks about this, but I believe God sent her to help not only her son Cannon who has HPP. In the Bible, Deborah was a leader who a man approached when he didn't want to go to battle alone. She agreed to go and the battle was won. I believe we have been in a battle for years to first find a treatment and a ultimately a cure for HPP. God chose a woman who is trained and gifted in communication and media to help spread the word and connect the dots for HPP. 

When I went to Atlanta recently with Soft Bones for an Advocacy in Action event, I saw the vision come together for the first time. Soft Bones connects the key players from top level Doctors, Researchers, Patients, Caregivers and Advocates to forward research and to  find solutions for HPP and the community. This is a national as well as international vision as we work to connect people around the globe. 

Deborah, I am honored to know you and have you as a part of our Soft Bones family. In some of our darkest hours with our most challenging battles with HPP Soft Bones has been there calling and connecting to see  if we need anything and what can they do for us. I truly don't know what I would have done without them. I believe they played a huge part in the life saving drug Strensiq being approved and saving the lives of so many HPP patients to this day.

We need your help to continue on as Soft Bones continues to fight HPP on multiple fronts including the following. 

   Your gift will support

• Educational programs and services
• Policy and advocacy efforts to increase recognition of HPP and access to necessary services and treatment
• Advances in research to further new treatment options and an eventual cure
• The Emergency Fund to support children and adults with urgent, life-threatening HPP around the world, providing them with access to physicians who have experience with HPP
• Travel grants to allow those with HPP, their families and caregivers to attend our patient education meetings

 If you would like to make a tax deductible contribution to help fight HPP please click here.

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