Happy Wednesday loves!
Our Wednesday Warrior for this week is Leah Javon!
On top of using her social media to spread awareness on sickle cell and lupus, she is also a grad student studying to be a counselor in the mental health program and is a ray of light and encouragement to those around her. Learn more about who she is and her story.
I'm 24 and am married. I live in Austin, Texas and am currently in graduate school online to become a counselor in the mental health program. I have sickle cell disease and lupus; sickle cell I've had since birth, and lupus I was diagnosed with when I was a junior in high school (back in 2011). Through social media, I try to spread awareness about chronic illnesses and post about fundraisers that help cover my medical expenses.
What was the hardest part of your medical journey that you had to overcome?
Still overcoming, but the pain. Sometimes I see people functioning and it boggles my mind that they're able to do any of that because I simply can't.
How do you live beyond your medical condition? What motivates you to live beyond it?
Thinking about the future helps me overcome my medical condition. I hope to become a psychologist or counselor (possibly working in chronic illness counseling) in the future. Thinking about the future motivates me. I think empathy is important and being someone who understands the situations and pain of other patients, I'm able to help those dealing with chronic illnesses in what they go through with empathy.
What would you say to others who are walking through similar medical journeys?
I would say try to find doctors that have dealt with patients with similar conditions to you. Sickle cell is most common among African Americans and lupus among women of color. It's important to make sure you find the right doctor who has dealt with and understand the conditions of those patients. Just any oncologist or hematologist may not understand what you go through best. Some doctors can learn about the illnesses by reading a textbook but a doctor who understands your situation is important. When I used to live in Oklahoma, it was difficult trying to find good medical care and a health professional that can empathize. So I'd say don't be afraid to reach out for support on social media or go onto another doctor!
As a community, how can we help and support you?
Get informed. Not only look to organ donation but also bone marrow and stem cell transplant. Sickle cell is most common among African Americans, and only about 7% of donations are from African American women. Matches are through those as close to an ethnic group as you, so there is a very low chance of match. Sickle cell has a cure. You can look to bethematch.org (kit is free for those aged 44 and below), the registry will send in a cheek swab kit and will take into consideration your area, ethnic group, etc. You can help people diagnosed with blood diseases through the BeTheMatch program. I've been on the list for 8 years now, so I think awareness and looking into transplant programs are incredibly important.
Anything else you would like to share?
There's that response "You look normal/fine" when people speak on their illness or even when they use a handicapped parking permit. I would have to say people don't have to look sick to feel sick.
I can look perfectly fine and that nothing is wrong with me, but I may be feeling my lowest that day. It's important to remember and be aware of that.