Hear from people taking SPEVIGO

I was diagnosed with GPP at the young age of three. My amazing mom guided me through every step, from getting a diagnosis, to selecting doctors, to establishing ongoing care. She showed me how important partnership is when living with a rare disease, and she was by my side for every challenge.

My mom’s example has never been lost on me, even now that I’m a 36-year-old nurse who deeply understands GPP. As an adult, I’ve been fortunate to have an amazing partnership with my doctor, who, like mom, has handled the ups and downs of my journey with care. He has helped me make well-informed decisions and gain greater control over this disease.

Our partnership began about 14 years ago, during one of my most challenging moments. I was in nursing school and had been hospitalized multiple times. At times, I was physically debilitated by my GPP – finding it hard to walk or have the energy to move. Then I met my doctor, and he helped me manage my treatment plan over time.

 

I affectionately call him my “life saver,” not just because his management of my care took me from being hospitalized to healthy enough to graduate nursing school, but because he kept advocating for improvement and encouraged me to not accept the status quo.

He became an equal champion of my health.

Over the years, my doctor followed the scientific advancements for GPP and proactively shared research updates with me. I was educated and aware of potential options for my future. With GPP symptoms always ‘there’ – sometimes in the background, sometimes more present – we didn’t shy away from trying new approaches; he was just as passionate and focused as I was on improving my reality.

 

I remember when my doctor first mentioned SPEVIGO to me — he was really interested in the idea of a targeted treatment for GPP and his optimism was contagious.

Once SPEVIGO IV was FDA approved, my doctor mentioned it to me as an option, and I was so relieved to hear there was something that could treat my flares. We reviewed the potential side effects and what to expect and agreed it would be a good choice for me. I am also forever grateful to my doctor for handling the process to get me set up with an infusion center in record time when I had a flare.

When SPEVIGO SC was approved for use between flares, my doctor and his staff filled out all of the necessary forms, making it a seamless process to receive this treatment at home.

Today, in partnership with my doctor, I feel more in control of my GPP and prepared to handle challenges that may arise. By sharing my story, I want to provide hope for others — find a doctor who truly feels like a teacher, someone who will walk this path hand in hand with you and champion your needs. You deserve it.

Individual results may vary based on many factors, including elements like the severity of your GPP, your treatment plan, and any other conditions you may have.