Hi, everyone, today we will be speaking with Heather Avant, a Sickle Cell advocate, who began work to raise awareness of this disease at the very young age of six years old. Heather’s work has been published in the Premier Medical School Journal, and she also spoke at the National Sickle Cell Convention in Washington, DC. Heather’s dedication to helping raise awareness and advocate for this disease is quite an inspiration.
Thank you for taking the time to speak with us, Heather.
Can you tell us how old you were when you found out you had sickle cell?
Since my brother was tested early and diagnosed at less than one year old, they tested me in utero.
How were you able to cope with school and sickle cell?
School was difficult at all ages and all levels. I remember missing so much school while I was out sick, whether at home or in the hospital. The funny thing is while being on pain relievers; school was always so hard to keep up with. Most medical centers have great programs in place that have been huge with helping children achieve a great education while being hospitalized, unfortunately for me these programs weren’t in place when I was a child. I spent lots of time catching up and lots of time falling behind in school. It was tough, I had to study twice as hard, and with the heavy narcotics it made it all but impossible to remember things. But with some serious willpower and the desire to be better, do better, and live better, it was all worth it in the end. I walked across the stage with my Bachelors in Fine Arts.
How did your childhood and your parents influence you in your choice of career?
My parents always told me I could do whatever it is that I wanted to do. Being around hospitals so much as a child, you automatically want to become a doctor. As a child I wanted to be a pediatric hematologist, as I got older those dreams turned into a career as a pediatric nurse. I wanted that face time with the patients not unlike myself. It was not until university when I was in the hospital bed, and I just had a break down and realized that actually I hated being in the hospital, so why in the world would I want to work in one? In a hospital ward every day? So I decided to change my major to something that I truly enjoyed and that I was passionate about. It was the camera, the idea of being a photographer, being able to capture special moments that the narcotics were always too soon to erase. It was all too soon after university when I realized that in order to do the photography that I wanted to do, I would have to get a “real” job. Meaning I could still use my camera for a side business and as my passion, but I needed health insurance. So, I went on the get a job at something that I knew would be stable – Customer Service and Project Management. However, my passion is Sickle Cell patient advocacy and photography.
What do you do? What kind of experience and schooling does one need to get your job?
I am currently a project administrator for Crossmark, a marketing firm, and I work closely with Johnson & Johnson. For this job the only thing that I think you would need is a Bachelor’s Degree, however I’m not sure if that is even required. In regards to my photography and patient advocacy, I feel that my education has played a very important role. I needed to know how to speak to large audiences, and how to adjust my photography to be on note with what people want to see. To take a look at the gore of a life of a person with sickle cell, all the while telling their story and making it beautiful, whether sad or happy. Every person living with this disease has a story and to be able to tell it through the lens of the camera is magical.
Describe a typical day on your job.
My 9-5 day job is boring, my advocacy work is the zest of my life, with lots of twists and turns and always something new.
How do you manage SCD and still maintain a thriving career?
Managing my sickle cell has been at times a challenge, but I learned very early on to listen to what my body is telling me, and not work beyond my limits. Although, at times I can be very hardheaded, I make sure that I take care of me first. If I’m not well, then my job will not get done. Last year I fell ill with Acute Chest Syndrome and that was a life-changing event for me. After that event, not unlike all warriors, I now know what death looks like and I was a bit too close for comfort. I decided that I needed to start living and stop making excuses for tomorrow. I have always known that tomorrow was not promised. I guess that I needed the kick in the pants to get me all the way there. Now I live like perhaps I won’t see tomorrow. And life has come alive. I’ve been on Hydrea and it has been amazing. I went from being scared to death of this medicine to full-on advocate for it, as it has been life changing. It has made me want to teach more, and stand up for all of the other warriors that don’t have a voice or are not quite ready to do it for themselves. Although it has not taken the pain away all together, it has made the unknown less scary. As of July 4 of this year I hit my one-year anniversary of staying out of the hospital, post ACS. I attribute that to glory to God and Hydrea.
Have you noticed a difference in how your coworkers treat you once they know you have SCD?
I rarely talk about my illness to my colleagues, or coworkers. Once they find out, I can generally count on one of two reactions, either they will give me a look of pity, or they will be ignorant enough not to care. When I tell co-workers, I do my best to educate. I find telling them later gives them a chance to make their own interpretations about me as a “normal” and “healthy” individual without bias. I never want to be treated differently because I “can’t” do something.
What advice would you give to someone wanting to join your profession that has sickle cell?
Don’t work a 9-5 unless you love it! Do what you’re passionate about. I love being an advocate, so I volunteer and I go to support groups, and I lecture medical students. I do whatever I can to get my face and my story out there. I speak to different Hematologists, whenever I have a willing audience. I have this burning desire to educate and I know that through photography I’ve been blessed. So find what you’re passionate about and go for it. No matter what your limitations are you can achieve great things and never let anyone tell you something different.
How did you get started in advocacy work for sickle cell?
I began my advocacy work at six years of age in my first newspaper article discussing what sickle cell was to me. I went on to create and present science fair projects about what SCD was in grade school, and in middle school gave a report to my 7th grade science class on why I was “always” absent. In college, I declared my major in Photography and continued to do a black and white photo series of my life as a SCD patient. I began speaking to the public in my 3rd year at university. After College, I was asked to lecture as a patient advisor at the University of Michigan Medical School about multicultural healthcare and to discuss the disparities in healthcare of individuals living with Sickle Cell Disease. In order to reach a broader audience I spoke at the National Sickle Cell Convention in Washington, DC on documentary photography and how the visual or photo voice impacts treatment. I’ve been published in the Premier Medical School Journal along with Dr. Andrew Campbell, a Hematologist at the U of M Medical Center, who specializes in Sickle Cell and maintaining an exceptional standard of care. Advocacy will continue to be the driving force behind my desires to teach and thrive as a SCD patient. I look forward to continuing my journey spent on volunteering and doing whatever it takes to change the way Sickle Cell is viewed in our society.
Sickle Cell will always be a part of me but it will never be all of me.
Has sickle cell limited any areas of your life?
The only areas of my life that sickle cell has limited is mountain climbing, jumping in a cold pool, the polar bear swim in Michigan and deep sea diving. I’m not sure I would even want to try the aforementioned, but I’m game to try almost anything else.
When you do reach obstacles in your life, what helps you through it?
I know for a fact that everyone has obstacles in their lives, but I also know that you’re in control of your own life. I know that Sickle Cell will sometimes beat me down, and then I remember that I was given a voice and the capacity to speak. I see others who are sick with other illnesses and I could be much worse off. I also know that everyone’s path is different. So when I get down, I always first turn to God and second to family. I turn to the individuals that love me and have every desire to see and help me succeed. I am extremely blessed to have such a loving family and support system of friends.
Do you have regular pain (more than 2x a week)? How do you cope with this when you are working?
Unfortunately I have AVN of both my hips and both shoulders, and although my sickle cell painful crises have become less frequent with the use of Hydrea, nothing will take away my Avascular Necrosis pain. At the age of 20 my body turned on itself and started rejecting standard analgesics (pain meds). It started with the small things that one might take at home for pain like Aspirin, Tylenol, and Motrin and it grew into all pain meds like Vicodin, and Oxytocin, Morphine, and many others. So I’ve had to learn to work with the pain that I’ve been given. I’ve had to grow stronger in myself and learn that there will most certainly be bad days, and there will also be worse than bad days. So I cope, with prayer, with work, keeping busy and with heat. I keep a heating pad in all areas of my life. I keep one in my car, at work, in the living room of my home, and one in bed when I sleep. I also drink plenty of fluids, up to 2 gallons a day on a painful day to keep my cells moving and to help keep my blood vessels dilated. I am very aware of what is ahead of me, I don’t forget that I have sickle cell not even for a moment, if I’ve learned nothing over the last 12 years I’ve learned that.
What is your daily medication regimen and what medications do you take when you are in pain?
I take Penicillin 2x per day. I had my spleen removed as a child and they never took me off of it. Folic Acid 1x per day, Hydrea 2x per day, Omeprazole 2x per day, Vitamin D 1x per week.
For pain it’s simple, I can only take one pain medicine, the only one I’ve been tested not to be allergic to, and that’s Dilaudid. Along with Phenergan for the vomiting that Dilaudid causes, and Benadryl for the severe itching.
How has sickle cell affected your personal life? For example, are you in a relationship, do you have kids, etc.
I would be lying if I said that sickle cell did not affect my personal life, for a long time I wondered if I would ever get married. Dating was fun for me. I had no intention of telling anyone up front about my sickle cell. I always waited for the guy to get to know me first. After about the first 3 weeks or so I would tell, usually over a very nervous dinner conversation. However, I realized that when the time is right, and when it is the right person, they just won’t care. The will accept the fact that you need additional help for some things and they will accept the fact that they may have to be a constant beside your bed while in the hospital. I had to have patience with myself and with my husband (Jason) in order to move along in growth and understand of how relationships (outside of family) work living with Sickle cell.
If you aren’t single and fabulous:), please tell us about your significant other. How have they helped you with sickle cell? How did your relationship evolve taking into account your sickle cell? When did you tell him?
Jason (my husband) is my best friend, but it took a long time for me to be able to call him that. We were in a long distance relationship for over 3 years before he made me his wife, and I’m sure a lot of that time was him working through the idea that I and my “issues” are quite a bit of work. However, he has been an amazing rock and someone who has given me understanding that I’m not sure I always deserve. We’ve just begun our journey of husband of wife and we look forward to growing in marriage and in our total understanding of what Sickle Cell is to our family. I told Jason about my Sickle Cell the moment that I started having feelings for him, the moment when I knew that it was either all or nothing. After my long speech that I had gone over and over again and again in my head, his only reply was, “All I ever want to do is take care of you.” For me, that was saying more than enough. We’ve continued to have open dialogue about my SCD, my brother’s SCD, and what it means for our family.
If you do have kids, please describe in as much detail as possible, how your pregnancy, labor and delivery was. Do any of your kids have sickle cell disease?
No kids. We do plan on having children and Jason has been tested clear of any types of trait.
Looking at the 14-year-old version of yourself, what would you tell him or her if you could…?
I would tell myself that it’s not going to go away so plan for that, do as many cartwheels as you can, roll and play, jump and spend as much time falling down as you want. Enjoy being a child, don’t grow up too fast. Don’t worry so much about everything and live free because you will live and thrive as you get older.
Is there anything else that you would want to tell other sickle cell warriors?
We all have those “Why me?” moments, when we’re being checked in to the hospital for another long stay, but know that God does not make mistakes. He has given us all gifts and it’s up to us to shine light on what those gifts are. You are uniquely and wonderfully made and never think otherwise. Continue to fight because your life is worth it to so many people.