If you have ever googled cystinosis to learn about my disease, you've probably learned about Dr. Paul Grimm, one of the leading nephrologists specializing in cystinosis. We had the pleasure of meeting him in December at the 2nd Annual Nemours Cystinosis Family Conference, and again at his cystinosis clinic in February at the Lucille Packard Children's Hospital at Stanford University. That's right folks, I got to make a trip to sunny California, and it was amazing!
Every couple of months Dr. Grimm has cystinosis clinics, and sees patients from all over the country and beyond. He has seen over 80 patients with cystinosis, and is definitely one of the leading experts in my ultra-rare disease. I have been doing very well on my medicine, but Mommy and Daddy felt that if anyone could answer their questions and confirm that my current medicine regimen is sufficient, it would be Dr. Grimm. Dr. Grimm spent a lot of time talking to us about everything from my water intake to my current medicine dosing - when, how and why. In fact, Mommy and Daddy wouldn’t shut up with all the questions, they really grilled him. We are so grateful to have Dr. Grimm accessible and committed to our community, and it was a perfect way to spend Valentine’s Day. Dr. Grimm is definitely my Valentine!!
I also got to meet other kids with cystinosis, and we got to spend time with an amazing mother and son from California who we adore and admire. It always makes me feel happy to meet others like me, and to know the Mommy, Daddy and I are not alone in our fight for better treatments and a cure for cystinosis.