Imagine being a pediatric cancer patient at the age of 8 with a rare survivable type. Yet, against all odds, you do manage to survive and are left with secondary lymphedema in the aftermath only to face a lack of pediatric lymphedema treatment options.
This is the story of Catherine Rosenberg, which spans over 20 years. It describes in her own words how she took the childhood battle fight for her life and turned it into a crusade for helping millions around the world with lymphedema management.
Parts of Catherine’s story left me speechless. I hope you are as amazed and filled with hope at her strength and determination as I am. Incredibly honored to have her as part of the Standing Up To Lymphedema‘s #LymphieStrongPeople person of the week series and featured on this blog. On behalf of myself and my family, thank you for all of the work you are doing in the lymphedema space.
This is her story in her own words.
I was diagnosed at the 8 years with chronic lower extremity lymphedema secondary to synovial cell sarcoma, a very rare soft tissue cancer that did not have a strong survival rate in 1990. Lucky for me I told the cancer who was boss but unfortunately the cancer treatments caused lymphedema. My lymphedema was left untreated for 12 years, until I was 22 years old as there was not a pediatric lymphedema therapist around in the 90s thus causing issues with being able to obtain treatment.
When I was 22 years old and finally started receiving lymphedema treatment my bouts with cellulitis began and unfortunately did not end until 2 ½ years ago after I had a vascularized lymph node transfer at Fox Chase Cancer Center with a plastic reconstruction surgeon (I’ve had great results from the vascularized lymph node transfer procedure – Started out at 32% difference between my 2 legs and am currently hovering around 10% difference that is almost a 70% improvement in volume differential).
It was then, I realized the numerical method being utilized to determine the volume of my leg was not the best method and made a proposition to work on a research project as part of my Computational Science Master’s Degree Thesis with my physician. He asked me to prove my point and if I could he would agree to work with me – well I proved my point and we have worked together not only on my Master’s Degree project which got a me a full scholarship into Rutgers University Camden’s Computational Integrative Biology PhD program, but have also collaborated for my PhD dissertation project.
My dissertation project topic involves accurate numerical methods for limb volume calculations that are time efficient, and less of a burden for both the patient and clinician that is accurate when compared to Water Displacement, the true volume of a limb. Over the past year and a half we have been able to bring awareness about what lymphedema is, current treatments surgical and non-surgical that are available as well as provide insight into other methods that can be utilized in the clinic to determine limb volume for evaluating the effectiveness of treatments over time for various patients.
Below you will find other interesting links featuring Catherine. The world is not done hearing from this phenomenal and intellectual woman!