Living with an autoimmune disease is difficult, even when you have a strong support system. This autoimmune story is shared from the perspective of Justin’s mother, Katrina, who has been caring for her son since his ankylosing spondylitis diagnosis. Guided by faith and a mother’s love, Katrina continues to advocate for her son. Here, she reflects on Justin’s battle with debilitating illness, his eventual diagnosis, and the many sacrifices made along the way.
My name is Katrina. I am writing this because I don’t know what to do.
My son, Justin, was diagnosed with ankylosing spondylitis, a painful chronic disease that attacks his spine and joints. Because of his disease, Justin has been unable to walk or work since the age of 18. Before his illness, my son was working and running track and field. But one day, he started to feel pain that was so severe it brought him to tears.
I took Justin to numerous doctors but no one could ever tell me what was wrong with him. As time went by, he started to lose muscle mass. At 106 pounds, he was skin and bones. Because of his declining health, we were more determined than ever to find answers about Justin’s illness. I took some time off work and we traveled from our home in the Bahamas to Gainesville, Florida, where Justin was able to see a team of specialists. After three years of suffering, he was finally diagnosed with ankylosing spondylitis.
Ankylosing spondylitis has a genetic component, and the doctors informed me that the risk factor gene for the disease was inherited from his father. Justin’s father left when he was 6 years old, so handling this situation on our own has been really hard for us. Justin now takes a medication called Humira to help manage his disease. He will have to take this medication for the rest of his life, but I always pray that God will heal him.
Justin’s disease has had an enormous impact on his life and on our family. I even lost my job due to the demands of caring for him. We were able to receive some assistance after our home was damaged by hurricane Dorian, but we had to spend that money in order to get Justin to the United States for his specialist visits. Now, we have nothing.
I am sharing Justin’s story to encourage others. If you are living with an autoimmune disease, please share your story too.
I hope that by speaking up, we can bring more attention to this disease and get more experts involved in looking for a cure.
Thanks for listening.
The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.