10/09/2026
# 💜 Help Me Keep Moving Forward: My Journey With Gaucher Disease Type 3
**October is Gaucher Awareness Month. I'm sharing my story to raise awareness about this rare disease and ask for a little help as I continue navigating the challenges it brings to my life.**
Some battles are invisible to the people around us. Sometimes, the person who appears to be doing just fine is fighting through pain, exhaustion, and worries they don't know how to talk about.
This is my story.
# # # A lifetime of unanswered questions
Gaucher disease is a rare genetic disorder that has been part of my life since birth, but I wasn't diagnosed until 2008. For years, I experienced symptoms that I feel were dismissed because of the lack of awareness surrounding this disease.
In 2008, when I was just 21 years old, I was hospitalized after suffering a ruptured ulcer. During my hospitalization, my doctors noticed that my bloodwork was extremely abnormal. This led to further testing, including PET scans and CT scans.
When my hip began giving me problems, doctors performed a bone marrow biopsy. That's when they discovered Gaucher cells and I finally received an explanation for what had been happening to my body.
I was initially diagnosed with Gaucher disease type 1 and later re-diagnosed with type 3, which for me involves chronic bone crises and neurological symptoms.
The disease nearly took my life. In the fall of 2009, I underwent a hip replacement because of complications from Gaucher disease. I've been receiving enzyme replacement therapy (ERT) since 2008.
Getting a diagnosis was only the beginning of a long journey.
# # # Learning to live with Gaucher disease
It took me nearly a decade to learn how to better care for my body and adjust to life with this disease. I worked on improving my diet, eating better, and incorporating exercise into my life. I had to learn how to listen to my body, recognize my limitations, and make changes to take better care of myself.
I've worked hard to get to where I am today, but living with Gaucher disease is still a daily challenge.
One of the hardest parts is simply trying to live like a normal person.
I try to maintain a strong mindset and not show weakness. When chronic pain makes it difficult to move, I push through. When chronic fatigue leaves me completely drained and my energy is gone, I sometimes pretend I'm fine and keep going anyway.
People may not always see what I'm going through. They may not see the pain, the exhaustion, or the effort it takes just to get through an ordinary day.
Some days are harder than others, but I keep trying.
# # # Doing my best to stay independent
I've even returned to working part-time because I want to do everything I can to support myself. Unfortunately, I'm only able to work about 20 hours a week, and even that leaves me completely exhausted.
I want to work more. I want to be independent. I want to live my life without constantly worrying about whether I'll be able to afford the things I need.
But I can't work the way I used to, and that's a difficult reality to live with.
On top of managing my health, the rising cost of living has made everything increasingly stressful. Transportation to and from treatments, specialist copayments, infusion-related expenses, household bills, food, and other necessities continue to add up.
I'm doing my best to keep up, but when your health limits how much you can work, even basic expenses can become overwhelming.
Sometimes, the hardest part is knowing how hard you're trying and still struggling to make everything work.
# # # Why I'm asking for help
Asking for help isn't easy for me. I've spent years learning to push through challenges, take care of myself, and keep moving forward.
But I've reached a point where a little support could make a meaningful difference in my life.
I'm asking for donations to help ease the financial burden of living with Gaucher disease. Contributions would help with transportation to and from treatments, medical expenses, specialist copayments, everyday bills, food, and other basic necessities.
My hope is to take some of the financial pressure off so I can focus on my health, continue receiving the treatment I need, and have a little breathing room on the days when pain and fatigue make everything harder.
I'm not asking anyone to solve all my problems. I'm simply asking for a helping hand as I continue doing my best to navigate a life with a chronic disease.
# # # Help me spread awareness this Gaucher Awareness Month 💜
I want people to understand that living with a rare disease means more than attending medical appointments or receiving treatment. It can affect your ability to work, your energy, your finances, and your ability to do the everyday things many people take for granted.
Behind every diagnosis is a person trying to live a meaningful life.
For me, this journey began long before I had a name for what was happening to my body. Since my diagnosis, I've fought to understand my disease, learn how to care for myself, and keep moving forward despite the challenges.
I'm still here. I'm still trying. And I'm still doing everything I can.
If you're able to donate, any amount would mean more than you know. If you're unable to contribute financially, sharing my story with your friends, family, and community would also help tremendously.
Every donation, every share, and every word of encouragement makes a difference.
Thank you for taking the time to read my story, for helping raise awareness about Gaucher disease, and for giving me the opportunity to share what this journey has been like.
**At 21, I was finally given an answer to what had been happening to my body. Since then, I've spent years learning how to live with this disease. Today, I'm asking for a little help so I can continue moving forward.**
From the bottom of my heart, thank you for your kindness, understanding, and support. 💜
