We had the pleasure of spending some time with Jessica Gillian, and now you have the pleasure of meeting her too!
At the tender age of 4 months old, Freestone County resident Jessica Gillian was diagnosed with Sickle Cell disease. After confirming her diagnosis, doctors told her parents that she’d likely never have much hair, her quality of life wouldn’t be very good and worse of all that she didn’t have long to live. They estimated she wouldn’t see her 20s. Well at 32 years old Jessie, as she is affectionately called by family and friends, has defied all of those predictions. Her path hasn’t been easy, that is for certain . . . but she most certainly doesn’t look like what she’s been through.
Relying heavily on her faith in God, Jessie has weathered a storm of affliction that most people can not even conceive of. The Sickle Cell disease has caused her a plethora of medical problems including skin lesions and ulcers, anxiety and depression, blood clots, hearing loss, vision loss, anemia, a compromised immune system, shortness of breath, extreme fatigue and Avascular necrosis (AVN) in both hips.
We sat down to talk with Jessica about what she faces daily as a Sickle Cell Warrior.
How Does Sickle Cell affect your daily living?
Everyday is a different battle. I have near constant daily pain and there are days where I can’t walk. I miss alot of important events. I’m often stressed and anxious that I will have to go to the hospital from hurting. The biggest thing is not being able to enjoy the simple things that people take for granted like driving a car, being able to walk, someone having to help you get dressed, cook for you etc.
Are there any cures available that you are aware of?
There are bone marrow transplants and stem cell treatments, but those options are a 50/50 chance as opposed to a 100% cure. There are risks involved that outweigh the possibility for me.
What would you say is the hardest part of living with Sickle Cell?
The pain and depression are really hard, and not being able to live a normal life.
What coping mechanisms do you use to deal with your illness?
I really enjoy the sunshine so I try to spend as much time outside on nice days as I can. The fatigue and possibility of infection limit how often I get to do it though. I really enjoy photography, listening to music, being alone, and peace and quiet. Each of those things really helps me to deal with my situation.
Are there daily therapies, or eating practices that you use to help you manage your sickle cell?
I am on multiple medications that help to deal with the symptoms. I try to get a lot of rest and eat foods that build my blood, and of course drinking lots of fluids.
What is the best way that friends and family can help advocate for you?
Ask me questions about what it is that I go through on a daily basis so you will be able to tell more people about how serious this disease is. Be very supportive in all that I go through. Share all that you know on social media about this disease during the month of sickle cell awareness (September) or sickle cell awareness day ( June 19th). Wear burgundy or a graphic shirt to show your support.
When you are having a flare up, what can I do to help make your day easier?
Be available if I need you and above all be understanding. Try to get an understanding what is happening with me at that moment and what I am dealing with, in case you have to take me to the ER.
Are there things people may want to avoid saying that can be unintentionally hurtful or disrespectful?
It’s really hurtful when people ask “are you sick again!?”. Or when they say things like “if you did this, that would make it better and you would be healed up!”. I’ve also heard, “I can’t believe you’re still dealing with that! Why aren’t you better!?” The worse ones though are probably, “my family member died from it,” “girl I just couldn’t do it if I were you,” and “you haven’t healed yet!?” I don’t need to be reminded that I could die, that having sickle cell is hard or that I’m not healed. Those things can be really hard to hear and make the depression and anxiety worse.
What can friends and family do to help you navigate your Sickle Cell better?
Be supportive, call me to check on me and do things to encourage or uplift or brighten my day. I really appreciate it when my friends and family look up things to learn more about sickle cell, so they know when I’m not feeling well or if something is going wrong with me. The most important thing you can do is know if you have the trait so you won’t pass it on to your children.
To learn more about Sickle Cell Disease please visit https://sicklecellspeaks.com/ to hear other stories of strength and find resources for understanding and managing sickle cell.
We at Freestone Medical Center are challenging each of you to get educated and do your part to raise awareness. Contact your healthcare provider to find out if you have the sickle cell gene. To schedule an appointment with one of our clinic practitioners call 903-389-2181.