Most people wouldn’t even know from looking at her. You would never know her struggle because she is so positive and happy. Rare Disease-Addison’s Disease. Today we celebrate her and countless others whose story needs to be told. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision makers about rare diseases and their impact on patients’ lives. At our Germantown Campus, our Little Scholars teacher, Ms. Lauren has taught us what it means to thrive with and sometimes suffer from a rare disease. We want to share her story with you.
I was diagnosed in September of 2013 with Primary Adrenal Insufficiency, also known as Addison’s Disease. Addison’s Disease is a disorder that occurs when your body produces insufficient amounts of certain hormones produced by your adrenal glands. In my case, my adrenal glands have shut down completely. One of the treatments for this is to take a replacement dose of steroids to try and help mimic what my body doesn’t create.
The symptoms of Addison’s Disease can come on slowly and develop over years. Some of the symptoms of Addison’s Disease are:
- Extreme Fatigue
- Sudden weight-loss and loss of appetite
- Severe nausea and vomiting- leading to dehydration
- Increased heart-rate
- Salt craving
- Joint and muscle pains
In my case, I was severely sick for 8 years before finally being diagnosed.
Sometimes, the symptoms of Addison’s Disease can come on suddenly- causing what’s called an Adrenal Crisis. In this case, I take an emergency steroid injection in my thigh and immediately head to the hospital for IV fluids and steroids.
Signs of an Addison’s Crisis are:
- Loss of consciousness
- Severe pain in lower back
- Vomiting so much you cannot keep your steroids down
- Low blood pressure
Something as simple as a cold or ear infection can (and has) thrown my body into an Adrenal Crisis.
In the nearly 5 years that I have been diagnosed with Addison’s Disease, it has taken a lot from me. Addison’s Disease has made me spend more time admitted in hospitals and emergency rooms then the average person in their teens and early 20’s ever should. It has made me miss out on countless activities because I was too sick to attend. It made me miss out on 3 hours of my own wedding reception because my body went into one of the worst adrenal crisis I’ve ever been in-it almost killed me.
What Addison’s disease hasn’t taken from me:
- The feeling of empowerment I get when sharing my story
- Being able to train and successfully complete many races
- Being the best teacher I can be to six amazing early childhood classes over the years
- The desire to live each day to the fullest
- It has made me a more compassionate person
- It has never fully taken away my smile
- It has made me a better wife and soon to be mommy!
Thank you for listening to my story and allowing me to spread awareness. If I can leave you with one final piece of advice it is this- never judge what you don’t understand. Many rare diseases are also called “invisible illnesses.” You can’t often tell what someone is going through just by looking at them.
I may have Addison’s Disease, but it surely does not have me.
For more information go to www.nadf.us