Lisa Weber,  —

Lisa Weber lives in the suburbs of Tampa, Florida, where she works hard at being a wife and mother of two beautiful girls. She’s passionate about overcoming challenges while living with a rare autoimmune disease called scleroderma. This systemic disease attacks her entire body inside and out. Her diagnosis came in 2014, but she continues doing the things she loves: working as a client success manager, cooking (poorly), building furniture, and jogging (slowly). She will tell you everything she does is perfectly imperfect! One of her life goals is to help raise awareness for rare diseases and continue her personal fight to survive and thrive until a cure is found.

Articles by Lisa Weber

Despite Naked Body Inspections, I Still Love CellCept

Back when we had to patiently sit through TV commercials, I would shake my head in confusion after hearing all the possible side effects of the medications being advertised. I was baffled that someone would be crazy enough to risk their lives for a prescription. Until I became that person.

Taking My Next Step Without Scleroderma’s Permission

“Your life is controlled by what you focus on.” I read this Tony Robbins quote when I was diagnosed with scleroderma in 2014, and my takeaway was to focus on my strength and will to survive. I came across this quote again, eight years later. Only this time, I realized…

Celebrating Signs That Scleroderma Awareness Is Increasing

Note: The headline of this story was updated April 19, 2022, to clarify that scleroderma isn’t becoming less rare, but rather awareness of the disease is increasing. One evening in January 2014, I answered a call from my doctor’s office. After going over my lab results, a nurse nonchalantly…

I’m Scheduling Free Time, Not Just Appointments

Do you remember playing “house” when you were little? I have fond memories of each of my little friends choosing a family member to imitate, and together we would act out the different family roles. Some chose the parental roles so they could control the narrative. I probably shouldn’t announce…

CellCept Ended My Love Affair With Pedicures

It had been years since I’d stepped foot in a nail salon. Yet the moment the doors opened, I was immediately reminded how much I missed those days of being pampered. The beautiful crystals on chandeliers danced above me. The water features and serene spa music soothed my soul. With…

Battling Scleroderma Doesn’t Make Me a Hero

I couldn’t find our family’s teacup-size dog. She had only been out of our sight for a few minutes. I scanned the dark, fenced-in yard looking for this adorable, fluffy furball. My eyes finally fell upon her white body floating in the pool. She wasn’t moving. Time to save a…

Scleroderma Has Dented My Ego and My Forehead

Having a rare disease often means dealing with uncommon symptoms. Sometimes I get lucky and one of my specialists can explain and treat them. However, the mysteries of my scleroderma-stricken body usually leave my medical team scratching their heads. Every time I meet a new doctor, I leave the appointment…