Hi! My name is Tessa, and I have a rare disease called Acromegaly. My journey started in 2015 when we discovered I had a 9x10x12 tumor growing on my pituitary gland. When I heard ‘brain tumor’, my life flashed before my eyes. Let me tell you a little about my unwanted friend taking up space, rent free.
Most people recognize Acromegaly a bit more when they hear the names of pro-wrestler Andre the Giant, or author and motivational speaker Tony Robbins, or Kevyn Aucoin- world renowned makeup artist to the stars. Acromegaly is a rare condition that affects approximately 50-70 people per million. It is caused mostly by a non-cancerous tumor located on the pituitary gland. The tumor causes the gland to release too much of the growth hormone, GH. This extra GH tells your liver to make too much of another hormone called Insulin Growth Factor One, or igf-1.
When I heard ‘rare disease, no cure’ I had two choices: curl up and die or stand up and fight.
Option A wasn’t an option. I have a beautiful son who was only nine years old at the time, and I was not going to give up on him. I was scared and felt alone, and I put all my faith in love to God. I knew He would get me through it, although truth be told I spent many, many times wondering how he planned to do so.
I underwent not one but two brain surgeries between 2015-2017, and not without complications. During the first surgery in 2015, my dura mater (membrane surrounding the brain) was torn or punctured, allowing cerebrospinal fluid to escape through my nose. Spinal fluid coming out of my nose was some of the worst pain I’ve ever experienced. The doctors tried to insert a drain tube through my spine, but Acromegaly causes skin to thicken, and they could not get the tube in all the way. I prayed like I had never prayed before. By the following morning, it had slowed down enough to keep me out of emergency surgery, but not out of the ICU where I stayed another two weeks.
A regrowth occurred sometime after my first surgery. I knew they were unable to completely remove the tumor the first time around; however, my neurosurgeon had hoped I would get five years until another surgery was needed. Not so lucky on my part. My second surgery in 2017 was also not without complications. This time I developed meticulous diabetes, which came with its own set of side effects.
It’s now been 574 weeks, 4,022 days, 96,528 hours, and 5,791,680 seconds since my life changed forever.
It is so incredibly hard living with a disease that no one can see on the outside. Meanwhile, on the inside, it’s like your circuit breaker is not only misfiring but sometimes not firing at all. Due to my Acromegaly diagnosis, I’ve developed depression, anxiety, arthropathy, central hypothyroidism, chronic diastolic heart failure, coronary artery aneurysm, extreme fatigue, benign colon tumors, sever joint pain, pulmonary nodules, Raynaud’s Syndrome, coronary artery disease, and thoracolumbar spondylosis. I’m losing my teeth due to my skull shifting. I’ve had carpal tunnel surgery, some vision loss. At times it has been isolating, lonely, and most of all: depressing. I learned through my support groups that I am not alone. The best thing I’ve done, and quite frankly what’s kept me alive, is I found my tribe. You need support. You need doctors who will listen. You need to advocate for yourself. You cannot give up when doctors push back. You have to push back even harder and always remember to have faith.
I will never apologize for who I am today or the scars that I bear. I did not choose this path, and I won’t ever apologize for being a warrior. If you are suffering from a rare disease, please know you are not alone. Tell your story. Tell it loud and proud. Some won’t understand it, but many will thank you for it. And one by one your tribe will gather and you will never feel alone again. You are RARE. You MATTER. You are a WARRIOR. With brave wings she flies ~Tessa.
