La Jolla Soft Bones National Meeting 

                                           

                                                        Ready to fly to California! 

    How do you describe a rare disease patient meeting? Well, I had the opportunity to write a blog post on it two years ago (link here) and have found that it is always difficult to sum up the whole experience. As my husband Dave and I return from our third national meeting once again I am pondering what to tell others about the bond between hpp patients, families, loved ones and caregivers.

                                               

 Our friend Sue. I have learned so much from her about hpp! 

     They say when you find your tribe (community, family) to love them hard. We are doing the best we can to walk that out step by step and day by day. When we watch new patients at meetings we are delighted to connect, listen to their stories and answer any questions they have. They say everyone needs to be fully loved and fully known. I think that’s a huge part of it. They feel more fully known. We feel more fully known. Others who we sit across the table from hear us and say yes that’s how I feel too! Do you know that I’ve come to fully realize? Knowing and understanding why there is pain, why there is difficulty, and what can be done about it is validating and empowering as well as comforting! We may not understand the whys of everything but understanding one or more new facets about your diagnosis can be a comfort. I’m not crazy, it’s not all in my head, there is a reason why I am experiencing this. Then if there is treatment you can hear about and see others that are on treatment and those who are not, weigh out the benefits and risks to make an informed decision about your available options. These moments remind me of a quote from a favorite show of mine, Call the Midwife:

                                                “None of us have ever truly walked this way before

                                                 But if there is no map, no route, no arrowhead to follow

                                                 There is sometimes a star.

                                                 An we do not make our way without companions

                                                 As the road unfolds, we travel side by side

                                                 And share the shift from darkness into light”

     

                                                    Our friend Sally and I on break! She's a gem!

     There is also laughter! Laughter over the things that only a person with your flavor of rare would get. These are your people, family, community, and they really do give you with a sense of belonging. These are the people you talk with when your doctor does not know what to do, the medical professionals don’t know what to do. Often times only you and your inner circle know the hell you’ve been through and yet you meet people who get it when coming to these meetings. 

      Many sacrifice their money to make that one trip, pain in their bodies, perhaps risk a fracture to make that connection, get that education, and be empowered to advocate for yourself and others in your community. Forever changed, never the same, and encouraged to grow to your full potential. Do it afraid, go to a meeting, make the connections, be vulnerable and tell your story, fuel your tank for the journey. It’s not a sprint it’s a marathon. Pace yourself, and keep this quote in your heart:

“Sometimes life is shattered in an instant and all our certainties are savagely stripped away. Questions become our weapons, answers are our only hope. Without them fear engulfs us. Love and each other can be all we have

Love can not always save us but it can be the reason we fight 

Then love becomes the wound that bleeds the space to be filled 

The emptiness that echoes into silence”

-Call the Midwife

                                                           Copyright SHARONNMYLIFE  INC 2019 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.

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.

Copyright SHARONNMYLIFE  INC 2016 | all rights reserved

Unless otherwise stated, all words and photos on this blog are my own. If you use a photo, please link back to this site to provide credit. Under no circumstances, should the text of this blog be copied and re-posted elsewhere unless you have permission from me to do so. Please note, hurtful or offensive anonymous comments will be blocked.