Connecticut Children’s Patient Honored by the Lupus Foundation of America

Connecticut Children’s patient Annelise, 12, was recently invited to speak at the Lupus Foundation of America’s Evening of Hope in New York City as a Youth Ambassador. Her mother, Cheryl, shares why lupus awareness is so important to their family.

annelise delivering her speechCongratulations to Annelise on the incredible honor of becoming a Youth Ambassador for the Lupus Foundation of America! How did the opportunity come about?

Annelise was honored as a Youth Ambassador for the Lupus Foundation of America. While fundraising for the Walk to End Lupus Now we shared Annelise’s story which drew attention of the Lupus Foundation of America, Northeast Region. We were contacted and invited to attend the Evening of Hope and asked if Annelise would be willing to speak there as a Youth Ambassador.

Why did you decide to come to Connecticut Children’s for Annelise’s care?

We decided to come to Connecticut Children’s for Annelise because we received positive feedback regarding another child with autoimmune challenges. We initially saw Lawrence Zemel, MD when Annelise was diagnosed with Lupus and Sjogren’s. Everyone we have encountered in pediatric rheumatology at Connecticut Children’s has been very kind and made Annelise feel very comfortable.

This year, as a 12-year-old, Barbara Edelheit, MD especially made Annelise feel safe when her symptoms worsened due to a Lupus flare up. Annelise felt reassured that she would work with her until they figured out a plan. Dr. Edelheit has becomes aware that Annelise has had some uncommon symptoms with Lupus and adjusted her treatment accordingly.

annelise with her parents and Dr. EdelheitWhat’s one thing you’d like other parents and the general public to know about lupus?

One thing I’d like other parents and the general public to know about lupus is that you really have to listen to and respect your body. Annelise’s body tells her when she has done too much or needs extra attention. As a child it is difficult to know how and when to self-limit. As a parent I’ve learned to pay attention to triggers and responses in order to find a balance.

Is there anything else you’d like to share?

Dr. Edelheit, the nurses Ann and Tegan that work with her, and the infusion department have gone above and beyond to make needing to be at a hospital more than just a tolerable place to be. There was fear and anxiety for the first couple visits and infusions but once Annelise realized that everyone, including the people at admissions, is kind and caring, she felt more at ease needing to be at the hospital.

Dr. Edelheit was compassionate enough to accept Annelise’s invitation to accompany us to the Evening of Hope. She, Ann, and Tegan also supported and walked with Annelise and her team at Walk to End Lupus Now. Although it is upsetting for any loved one to be unwell it is a blessing to have trust in the people that are responsible for the treatment and care for your child.

Learn more about Connecticut Children’s pediatric rheumatology services.

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