Stepping Into Patient Advocacy

Welcome to Achieve the Impossible Today! I am so excited you found this blog post. I am working on sharing my journey with Alpha Mannosidosis on my blog with weekly/bi-weekly posts. This weeks post is all about my journey from being someone born with Alpha Mannosidosis to becoming an Alpha Mannosidosis Patient Advocate!

Patient Advocate?

This is a strange thing for me to be typing right now. I think this title explains what it is that I do, but I am just not used to it. I never imagined that I would have the capability to help others by advocating for them and helping them along on the journey. Being born with a rare disease, this never even crossed my mind. But this is where God is calling me and there is confirmation after confirmation about this calling.

Life has many twists and turns and we never truly know where we will end up. I still have no idea where I will end up. I just know that in this moment I am being called to advocating for those who have Alpha Mannosidosis. This means sharing my story, speaking with families, connecting families with other families and doctors, and guiding families through the process.

Rare Disease Changes Life

Being born with a degenerative disease if not treated means a life that looks very different than the typical person you see in a Starbucks or shopping at Target. Depending on the rare disease, one will have different struggles. For Alpha Mannosidosis, that would mean a very high chance of being in a wheel chair, barely communicating, having a challenging time intellectually, etc. The outcome is not the greatest.

Today, I am in a place that I never imagined and it’s only because of God’s mercy and the amazing technology and science we are experiencing today. The bone marrow transplant that I received was life changing and now God is working on completely healing me. The sky is the limit and this new season of life is challenging yet inspiring.

The Journey

Ever since I started sharing my story with being born with a craniofacial difference and Alpha Mannosidosis 4.5 years ago, I haven’t stopped. But before that first school talk, I was not okay with what I was born with. It was something that I wanted to avoid at all costs and not acknowledge. I wanted to be ‘normal’ and disregard everything I’ve been through. One of the main reasons was because I had no memory of any of this, just scars.

There was a lot I had to go through emotionally with being okay with my story. This did not happen over night. It took some time to be okay with my history and to learn why I had to go through what I went through. I am so happy that I learned because it has shaped me into who you see today. I never thought I would be sharing my story so frequently to parents, to doctors, and to those doing research. It’s been a complete 360 and I am extremely happy with where I am today. It was worth it. I am just learning to say that I am an Alpha Mannosidosis Patient Advocate. It hasn’t hit me quite yet, that I have already stepped into this calling.

I’ve been able to speak in front of middle schoolers, high schoolers, college students, professionals, and parents. I have spoken in front of 20 people to over 600 people. I started out speaking with a group of people, then myself, and now I am able to share my story alongside my parents. Here are some photos 🙂

Thanks for stopping by and reading this blog! Make sure to follow Achieve the Impossible Today, so you don’t miss a post. I am working on posting more consistently. If you have any prayer requests, feel free to comment them or contact me. As always, He can and He will help you through everything, we just need to seek Him first.

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