In March 2020, Isa started noticing an itch on the top of her head and the soles of her feet
She initially wrote it off until the itching was followed by intense stabbing pains. Her symptoms soon worsened and became so unbearable she was only able to sleep for 20 to 30 minutes at a time.
Knowing something was wrong, Isa began her journey to diagnosis
Almost every doctor Isa encountered was stumped by her symptoms, leading to misdiagnoses of dermatitis, eczema, stress, and even psychosomatic conditions (physical conditions caused by emotional factors).
Isa went through the full workup: exams, biopsies, and tests. She went to a number of different specialists and still they found nothing. Meanwhile, Isa’s skin was still itchy, oozing, and had severe scaling.
Isa’s reality became bleak
Most days, she was unable to get dressed, and she only put on clothes to visit her doctor. Nights were equally uncomfortable; she was not able to use bedsheets because they hurt her skin too badly. But through it all, she didn’t give up hope.
Finally, after many specialists, biopsies, and exams, Isa took a specific blood test
Her doctor shared with her that she was diagnosed with Sézary Syndrome. It was both a relief to have an answer and a heavy burden to carry. A cancer diagnosis is hard to face, but Isa faced it with courage and immediately began advocating for herself.
Isa’s journey to diagnosis took nearly 2 years and visits to 23 different doctors along the way
But the correct diagnosis changed it all. She was finally able to explore her treatment options and learned about systemic therapies. Once her treatment plan was in place, Isa received her first infusion in February 2022.
After treatment, Isa's cancer was in remission
She now spends her time advocating for other patients, giving presentations, and educating medical professionals and the general public about living with Sézary Syndrome.
