Talking about Prader-Willi syndrome with the host of Walking with Freya

As a newborn, Anne Fricke’s second daughter Freya had trouble nursing, slept really soundly, and had hypotonia (low muscle tone). At three and a half months of age, Freya was diagnosed with Prader-Willi syndrome. Anne shares her family’s experience with Freya’s initial diagnosis, how she found support within the Prader-Willi community, and what their challenges are now that Freya is 8 years old. Anne also shares how she has used writing and poetry to help process her feelings and how this led her to start her podcast, Walking With Freya. Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show. Links and Resources Anne Fricke’s website Walking With Freya podcast episodes Episode 4: “Diagnosis” Episode 53: Anne interviews Eleanor about Grey Genetics and genetic counseling Anne’s poem “Kintsugi” Purchase the writing journal Anne created: There Is Joy To Be Found Here; a writing journal for parents of children with special needs Prader-Willi California Foundation (PWCF) Prader-Willi Syndrome Association (USA) Follow Anne’s podcast Walking with Freya on Social Media: Walking with Freya on Instagram: @walkingwithFreya Walking with Freya on Facebook Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page Do you want to support Patient Stories? You can now make a donation online! Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media. Patient Stories on Twitter: @GreyGeneticsPod Patient Stories on Instagram: @patientstoriespodcast Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone. Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here.