Things I Learned After Being Diagnosed With A Rare Disease

Six years ago, at the age of 18 years old, I was diagnosed with Gaucher Disease (GD) Type 1. GD is a rare lysosomal storage disorder that results from a hereditary enzyme deficiency. Before my diagnosis, I experienced some of the most common symptoms, which are enlarged liver and spleen, low blood counts, fatigue, anemia, bone pain, easy bruising, and a lot of bleeding (ie. heavy periods and nosebleeds).

It’s undeniable that my journey with GD has been a long one; since being diagnosed six years ago, I have not only learned more about the disease, but I’ve learned a lot more about myself.

I wrote this article to share the most important lessons I’ve learned throughout my journey with GD. This article is not written with the intent to throw a pity party or ask for sympathy; it is simply to share the lessons I’ve learned with others who may need to hear it. You don’t have to have GD to benefit from this list. We all have our own unique struggles and obstacles in life. Maybe your struggle isn’t GD; maybe it’s mental illness, anxiety, self-doubt, or depression. No matter what you are personally going through, I’m sure that, in one way or another, at least one of these lessons will resonate you as well.

1. My struggle gave me strength. I love the quote, “I am thankful for my struggle because, without it, I wouldn’t have stumbled across my strength.” This is 100% my experience with GD. Being diagnosed with a blood disease is no easy feat but it caused me to demonstrate strength that I never knew I had. For example, I used to be terribly afraid of needles, but this changed when I had to start getting enzyme replacement therapy (ERT) every two weeks. From having a bone marrow biopsy, several MRI’s and infusions to getting a lot of blood drawn, everything happened so quickly that I had no choice but to get used to it. I bravely had to face everything I used to be afraid of; it was my new normal. After my diagnosis, things were quite different than what I was used to, but I simply had to adjust and continue living my life; a life that I never thought I could’ve even handled before being diagnosed, proving that I am much stronger than I ever thought I could be.

2. Appreciate life. When I was diagnosed, I was reassured that life is short and that I need to be thankful for everything. It was hard to come to terms with at first, but I knew that God put me through it because he knew I could do it. Even though I have GD, I am aware that my experience with it could’ve been much worse. I could’ve been diagnosed with GD Type 2 or 3 (which are life-threatening) or my symptoms could’ve been much more severe. For these reasons, I am so grateful and do not take my experience for granted at all. Yes, it can be difficult living with GD, but I am truly thankful for the life I have.

3. I am not alone. There’s a whole community of other GD patients like me. The GD community is amazing and I wish I would’ve become a part of it sooner. It wasn’t until I started a blog dedicated to sharing the stories of those affected by GD, that I realized how many other GD patients there are. Everyone in the GD community is so loving and understanding. We encourage each other and cheer each other up on our bad days. It’s a comforting and refreshing feeling to be a part of a group of people who totally understand what I’m going through. I’ve had the pleasure of connecting with GD patients from all over the world; every single person I’ve met has been wonderful and I’m blessed to be part of such a close-knit community that really feels more like a family.

4. It’s important to tell my story. After my diagnosis, I was reluctant to tell my story. I didn’t want people to know about my condition, out of fear that I would be treated differently or pitied. Whenever I had to leave school to get infusions, I would tell my friends I had to go to the doctor’s for a check-up. None of my professors or classmates knew. The only people who knew were my family, close friends and coaches. It wasn’t until three years after my diagnosis, that I decided to share my story with the world. I felt that it was more important to spread awareness about this rare, incurable disease than to stay quiet about it. I am so thankful that I began voicing my experience; it has opened so many doors for me and has enabled me to connect with other GD patients. So many people have thanked me for sharing my story because, either they never knew there were other people like them, or they didn’t know that GD existed! One of the essential things I’ve learned from this experience is that we are all unique and it’s important to share our perspectives. You never know who your story may resonate with, so don’t stay quiet!

5. Maintain a positive outlook. It was so easy to feel upset or discouraged when I was constantly going to treatments or having procedures done. Whenever I was in a bad mood before getting an infusion, I had to remind myself to be thankful that I was able to have treatment at all. Often times we are tempted to question God, asking “why is this happening to me”?, but I choose not to do that, and, instead, I choose to be thankful for my experience. I know that I am beyond blessed to have access to good insurance, hospitals, doctors, nurses, case managers and a supportive community, which I do not take for granted. I’m thankful that I’m not dying. I’m thankful that I get to see another day and live a “normal” life despite my illness. So even when I’m feeling sad, extra tired or having a little bone pain, I think about the positives in my life and I am always grateful.

To everyone who is dealing with, not only a rare disease but any type of illness or struggle, know that you are not alone. I know that it’s hard; I know it affects your confidence; I know it can make you question “why me?”. But there is always a light at the end of the tunnel; my experience is proof of that. I can honestly say that I’ve learned and continue to learn so much from my experience with GD and I would love to know what lessons you’ve learned from your personal struggles as well. Please share in the comments.

You can read the full story of what lead to my diagnosis on the National Gaucher Foundation website.

Author: Lauren
Email: laurenedwards324@gmail.com
Author Bio: Lauren is a lifestyle blogger from Maryland. She loves to use her written work and social media channels as vehicles to spread positivity, as well as inspire and encourage her readers. You can read more of Lauren’s work on her blog site Rocsirockstheblog.com. Be sure to follow Lauren on Facebook: Facebook.com/rocsirockstheblog and Instagram: instagram.com/lauren____edwards to stay up-to-date with her latest blog posts.
Link to website: https://rocsirockstheblog.com/


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