Jul 10, 2023 / Rheumatology

Share Your Story: Ella Grace's Extraordinary Journey

After noticing concerning symptoms like hair loss and skin changes on her forehead, 2½-year-old Ella Grace and her mom Brandi were referred to Scottish Rite for Children for help. When they traveled from their home state of Louisiana to visit us, our team quickly diagnosed Ella Grace with localized scleroderma, an inflammatory condition that causes hard or thickened patches of skin on the body, and Parry-Romberg syndrome, a rare condition that causes a slow breakdown of the skin and soft tissues of the face. Both conditions are rheumatological in origin, so our Rheumatology team was able to begin creating a treatment plan for her right away. 

Now at age 5, Ella Grace has come a long way since first becoming our patient. At first, she was absolutely terrified of doctors, hospitals and nurses. Throughout her treatments including weekly injections, infusions multiple times a month and taking many medications a day, our team has loved and nurtured Ella Grace to help her feel cared for and comforted while at Scottish Rite.

Ella Grace’s condition is not common – Parry-Romberg is estimated to affect 1 in 250,000 people in the general population and does not have a known cure. Brandi says that working with Dr. Elizabeth Sloan, Dr. Lorien Nassi and certified family nurse practitioner Stephanie Armendariz has been nothing short of phenomenal. Not only do they have knowledge about this rare disease, but they also care for Ella Grace like she is their own and are always a phone call away. Our team is doing whatever it takes to get Ella Grace’s disease into remission while providing Ella Grace with the support she needs to cope with her treatment. Two special caregivers of Ella Grace’s are Jill Black, R.N., who made her comfortable and earned her trust from day one and Hope Wheatcroft, R.N., who has been with her every step of the way and takes the time to play or do arts and crafts with Ella Grace during her infusion appointments. 

According to Brandi, when she and Ella Grace come to Scottish Rite, they are always welcomed with open arms and greeted with a smile. Back at home, Ella Grace stays busy with competitive cheerleading and being the best big sister ever to her two younger brothers. We’re amazed by the progress Ella Grace has made in her treatment journey, and we are proud to be a part of her ongoing care! ❤️

Learn more about our Rheumatology services.



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