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May 2022

In this month's newsletter: May is Mental Health Awareness Month | Micaela's Story | 5 Ways for Families to Cope With PANDAS | Helpful Books | A Mother's Thoughts

Dear Friend,

May is Mental Health Awareness Month, and some weeks can feel heavier than others. Life can feel overwhelming and PANDAS/PANS can trigger feelings of fear, anxiety, depression and anger. During these days, it's perfectly okay to take a step back and breathe. Often, we push aside feelings like these, but not acknowledging stress or negative feelings can lead to exhaustion and generally feeling unhappy. Make sure you are checking in with yourself and practicing self care.

On days when you feel overwhelmed, it can help to know that you are not alone. Read our latest patient story about Micaela's children Kai and Brielle, who both dealt with disabling symptoms of PANS and autoimmune encephalomyelitis for years before getting an official diagnosis.

Also featured below are links to our two latest blogs: 1) tips for PANDAS family support, and 2) an encouraging message to PANDAS moms on regaining hope from fellow PANDAS mom Stacie Manna. When a child has PANDAS/PANS, it affects the whole family. It’s important for everyone's mental health to have coping strategies and familiarize yourself with PANDAS support groups and other resources that are available to you.

Sending you positive thoughts and support always.

Sincerely,

Diana Pohlman, Executive Director, PANDAS Network

New Patient Story: Micaela's PANDAS Journey

Micaela Widman’s children Kai (far left) and Brielle (far right) both suffered for years from undiagnosed autoimmune encephalomyelitis. Micaela discusses the many challenges families dealing with these conditions face when trying to get a diagnosis, as well as the importance of education and resources about PANDAS/PANS in the Midwest. Learn how they finally received life-changing diagnoses and treatment here.

5 Ways for Families to Cope With PANDAS

Focusing on mental health and wellness for caregivers, parents and siblings may not be easy, but it is a necessary step to overcoming the long-term effects of this disease. From finding a PANDAS support group to ways you can support other siblings and family members, find tips to help you cope with PANDAS here.

Helpful Books

Looking to learn more about PANDAS? Check out our collection of helpful books for parents and children dealing with this disease. These books are useful resources for parents, siblings, providers, educators and supporters of a child with PANDAS/PANS who want to learn more about these illnesses. Find our collection here.

A Mother's Thoughts

As PANDAS/PANS moms, we are faced with so many unpredictable and heartbreaking moments on a daily basis. Our child, or in some cases children, are suffering an unimaginable disease while their body attacks their own brain. It is by far one of the most exhausting, heart-wrenching positions to ever be in as a mother, while feeling completely unprepared and hopeless. We are here to help you regain hope. Explore more about a mother's journey with PANDAS/PANS here.

Follow PANDAS Network on social media to stay up-to-date on the latest news in PANDAS/PANS research and advocacy.