Sezary Syndrome: Sandra's Story

Sandra Flodin

Sezary Syndrome
Transplant in 2000
 

I was 19 years old when I was finally diagnosed with Sezary Syndrome after 2 years of symptoms and many dermatology visits. Even went to dermatology grand rounds twice. After a year of various treatments, at the age of 21 I had to decide, bone marrow transplant and maybe live OR do nothing more and die from an infection. In September 2000, I was transplanted at City of Hope, and my sister Emily was my donor.

After my BMT I received my Bachelor of Science degree in nursing because I wanted to give back the same care I had received from the nurses during my treatments. I also found love and got married to my wonderful, loving, and incredibly supportive husband, Henrik.

I have had GVHD issues (cornea, liver, gut, skin), but I am currently off all immunosuppressants for the last 5+ years. Finally, I just graduated with my Master of Science in nursing with specialization in psychiatric mental health nursing. My career goal is to continue to support cancer survivors and their families along the cancer journey from the beginning to whatever the outcome may be. Over the years I learned that "One's ultimate destiny is not in our hands," a quote from Dora Kunz that describes the reality that while we all hope for a cure and prolonged life, that is all out of our control.  

I never expected to live this long. I chose to share my story as I was feeling alone and saw another Sezary syndrome transplant survivor story. I learned while she and I are rare, neither of us are alone. This gives hope not just to me, but others who face this same disease.