The year started off with a cut.

On January 4th, 2021, the first day back from winter break, I had knee surgery.

I have a genetic bone disease called Multiple Hereditary Exostoses. The condition makes my body put benign tumors in my joints and other parts of my body.

What is Multiple Hereditary Exostoses? Hereditary Multiple Exostoses (HME) is a rare genetic disorder characterized by multiple benign (noncancerous) bone tumors that are covered by cartilage (osteochondromas), often on the growing end (metaphysis) of the long bones of the legs and arms. 1 in 50,000 people has this disease. I have only met three people outside of my family members that have it. Multiple Hereditary Exostoses is associated with abnormalities (mutations) in the EXT1or EXT2 gene. One of the scary issues is the risk for the development of malignant (cancerous) tumors, mostly chondrosarcomas are approximately 1 to 5%.

Chondrosarcomas are a rare type of sarcoma, so my family supports Pittsburgh Cure Sarcoma The mission of Pittsburgh Cure Sarcoma (PCS) is to raise awareness of childhood and adult sarcoma and fund research in the Pittsburgh region and beyond.

My mom was tested and she has the mutation in the EXT2 gene.

I was diagnosed at the age of 2 because I would point at my leg and say, “boo-boo” even though there wasn’t a scratch or bruise.

The doctors estimate I have over 100 tumors throughout my body.

I have had a total of 5 surgeries including the one in January. All different from the other. During the recovery process, I look horrible. So, I don’t have any pictures of myself during these times.

So, let me tell you a little bit about this recovery process.

I remember the whole day from 5 am when I got up to going home at 2 pm. I remember the pain and texting my friends while still feeling weird.

Fun fact, I won a game of cards on a lot of painkillers! My family members were really embarrassed because a person 2 days out of surgery beat them in cards.

This surgery was by far the most painful. My knee felt like it was ripped apart and put together again. Which I think actually happened but more carefully and with a saw. 

So, how did I cope with all of this happening?

Spoiler alert, I didn’t cope well. Some days I would feel fine and be able to participate in class and others I felt like crying because of the pain. 

The worst thing about all of this was my body lost all of its stamina. The first time I went in person, I slept for 3 hours after, just because my body was so tired. This kept going on for weeks and weeks until it finally got a little better. Now, as of March 5th, it has almost completely come back. 

During this time I got really behind on my school work and it was really stressful after. It took weeks after the surgery to get caught up and back into the rhythm of school.

Ever since I was a kid I went to therapy. I started in 2nd grade because the pain clinic I was going to required it. This condition doesn’t have any effects genetically on my mental health, but being in pain almost every second does. In the sixth, through eighth grade, I was really bitter about the whole situation. I blamed my mom for giving me multiple hereditary exostoses.

During quarantine this year I had a lot of time to think and reflect. So, I realized that being mad at my mother was dumb because she didn’t choose my genetics. Genetic combinations are random.

The situation is fine now. I still have depression and anxiety but I am seeing a doctor for that.

This past January was my definition of torture, I couldn’t walk, or feel the top of my knee cap. I still can’t feel the top of my knee.

I feel better now.

I think people should think before they do things. For example, people in the past have told me I don’t “look disabled” enough to be in the handicapped section. People would also sometimes say that I was just “bluffing” and wanted to pretend I had all of these issues for attention.

You don’t need to be in a wheelchair to have a physical disability. Some disabilities are “invisible”.

For a while, in my life, those statements didn’t bother me too much, but when I got older I realized how rude and disgusting those comments were.

Everything found in this article was found at Medline Plus and the National Organization for Rare Diseases.

Please be kind to people that are different.