Interview With Tiara Brown (AKA @tee_2017)

The Editorial Team at Sickle-Cell.com is highlighting people in the sickle cell community and their journeys in a series of Instagram interviews. We talked to Tiara Brown, aka @tee_2017, about her sickle cell story and what it means to be an sickle cell warrior.

Growing up with sickle cell disease

My personal experience with sickle cell disease (SCD) was not bad when I was younger. I really didn’t know that I was different until I started getting sick and having to go through some really painful episodes. It hit me really hard probably around 10 years ago. I thought that it was normal for all kids to just go to the hospital when they were not feeling “well” but I was wrong.

As a kid the most trouble I had with SCD was probably having pneumonia, fevers, and severe bathroom problems, constant fatigue, severe pain and body aches. At times I felt like I was always going through something and at times I couldn't explain it.

Being lonely and confused was my normal. There were many visits to the hospital to address my chronic issues with constipation or the really bad crisis. I really did not understand the extent of the complications of SCD because my parents ensured that I was as healthy as I could be until around eighth grade in 2012.

My first big SCD complication

I wore converse high tops a few weeks before my eighth-grade graduation. Then my left lower ankle became super black and discolored. It looked like someone had rubbed graphite on it. For about two weeks the spot hurt and felt funny. A few days later the skin began to look and feel thin, so I went to the doctor to get it checked. After many different doctor visits and consultations, I was told that it was a wound, or to be exact a “sickle cell wound.”

Receiving care

My family and I were completely lost and heartbroken! The wound seemed not to heal and got bigger and bigger after 9 months of driving from the city. I lived in a city that was about 1 hour and 30 minutes away. It finally healed. The joy of not dealing with it did not last too long because another wound showed up for no apparent reason. I was devastated!

We began the routine again but this time we were referred to a specialist that was closer to my home. He began to care for the wound and ordered hyperbaric oxygen therapy and physical therapy because I lost muscle in the leg and began to walk with a limp. This just put me in a different headspace because I was only 15 and missed the whole second half of the school year. I had to be transferred to the hospital homebound.

The emotional drain

The cycle seemed to continue as one wound healed another would show up a few months later and at times only a few weeks. I would cry and feel defeated, and I would be traumatized because of the intense pain and shame I sometimes felt.

A diagnosis?

The doctors seemed confused and could not really give me a reason why the wounds continued to return. The final diagnosis was either a sickle cell wound or a sickle cell ulcer for the lack of better words. I could care less what name they called them. I just knew I was in constant pain.

Overcoming health challenges

I still hold the blame on myself for wearing those shoes. It has been 9-10 years ago since I had the first wound. Besides the sickle cell wound, I have had to deal with issues from being born a preemie. I was born at 26 weeks and weighed 795kg, which is 1.12 pounds and the story behind that is another milestone I had to overcome. However, being so small I had to get a tracheotomy when I was only 5 ½ months and weighed 5 pounds.

It has been a very hard road dealing with many setbacks, doctor & hospital visits, and feeling completely helpless. But God kept me and my family in his plans.

Advocacy work

Editorial: What does sickle cell advocacy look like for you? What influenced you to share your journey on Instagram?
Tiara: In a perfect world, advocacy for me is teaching, educating, and speaking up when the moment presents itself, which is all the time. Having a group of like-minded people to reach out to when needed and to be there when others reach out is vital. For others dealing with this awful disease, it’s not just June 19th or sickle cell awareness month to show support. It is 24/7 every single day.

My parents and siblings tell me to be proud of who I am and don’t let sickle cell identify who I am, to take control of sickle cell, and never let it hinder my dreams, goals, present or future achievements. I always post positive things on Instagram. I don’t like when people pity me because that makes me feel even more depressed and sad. I just felt one day like I should tell my story good, bad, and in-between days.

Follow Tiara's sickle cell journey Instagram at @tee_2017!