Updated: Oct 26, 2021
Welcome back to our series "Letters to my younger self".
If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?
In this series, RARE Youth Revolution are reaching out to some of the slightly older members of our community who know what it is like to grow up with a rare disease. By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.
This time around, the letter comes from Dane Brandon.
Dane lives with Eosinophilic Esophagitis, a condition that causes difficultly swallowing, food getting stuck in the esophagus and chest pain.
This is Dane's LETTER TO MY YOUNGER SELF!
Dear younger Dane,
There is so much I want to tell you but let me start with some encouragement. In the years to come, you will have answers to explain your most recent challenges.
What you first believed as being “car sick” while experiencing difficulties swallowing your food in the car would later have my parents and I believing it was heart burn.
As time went on, that pain and difficulty swallowing food progressed and your source of pain in your chest would officially be diagnosed as Eosinophilic Esophagitis (EOE).
These two long complex words may not mean much to you now- at ten years old in 2011 but this was the true beginning of years to come of going through trial and error between prescription remedies and procedures to help treat my rare disease.
There will be years of skipping lunch at school and work because I fear of having an “episode” in public. In other words described as food getting lodged in my esophagus. This fear will only grow stronger to the point that it continued, starting from sixth grade till I graduated high school.
The same fear will continue during my adulthood as I started college and had dates with my girlfriends and went out with friends.
Yet to this day, often I ask myself “What am I going to do if I have an episode and where am I going to go?”.
I would have to ask myself this because I spent time and time having food stuck in my narrow esophagus which would cause an indescribable, unavoidable amount of pain.
This high level of pain would continue until the food was pushed into my stomach. Often drinking liquids would not help push the food down, so there was only one solution and that was to get the food back out. To make myself puke till I puked up everything I just ate so there would be no food stuck and allowing the pain to leave.
Dane, what you would soon find out is that during these episodes your anxiety would go through the roof, and your solution was to walk around outside by yourself and pray and plead to God for him to take the pain away quickly.
Because this is a rare disease, not many people understood my pain or why food was getting stuck. Not to mention I disliked all the attention as they watched my face get pale as my anxiety shot up. I would find it best for myself to remove all eyes off me by walking away, often to a bathroom or outside.
As years go by you will undergo different routes of medication. First you’ll start off with Zantac along with taking Flovent (fluticasone propionate). As time goes by, my doctor at the time will realize this is helping my EOE but not fully treating it as it should.
Some more time goes by, and it wasn’t until 2018 or 2019 that I started taking Omeprazole and Budesonide (swallow in liquid form) had the doctor and I realized this is helping control my EOE. We had regular check-ups until the day came that I thought would never happen, the day I entered remission for the first time in my life!
In that moment, I began crying because I knew all the tears and persistence was worth it.
I spent a minimum of ten years wondering if I would ever receive good news regarding my EOE and it was finally that long awaited day that I knew it was possible by the grace of God.
It is important to note, before you get to that point you will face numerous amounts of setbacks and you will want to give up. Trust me, looking back as an adult I understand and see all the setbacks I had, an eleven-year-old kid trying to explain to his parents and his doctor that I get chest pain when I eat. Everyone’s first thought is heart burn, not Eosinophilic Esophagitis!
However, being diagnosed with EOE at a young age and growing up with it with these last ten years, I understand these symptoms and I can remember my eleven-year-old self-trying to explain it to intimidating adults.
With that said, undergoing all these challenges throughout the years I am better equipped for the day when I have kids and shall any of them had symptoms of EOE, I can stand prepared.
So younger Dane, keep being a fighter and don’t give up no matter how hard it gets. You will get through it.
Written by Dane Brandon as part of our "Letters to my younger self" series.
To get involved with the RARE Youth Revolution, and this series, you can email our youth coordinator James Brooks at firstname.lastname@example.org.
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