I wanted to share a cute video from Juggling the Jenkins about what would happen if our brain held a morning meeting to prepare us for the day. All the usual characters come into play. For Cushies, the longevity and unrelenting force we face really wears us down. Take this video and multiply it by years and years. That's how badly Cushies feel it!
Thursday, September 5, 2019
Twelve year old Juliana says moving to Alabama saved her life, as doctors finally diagnosed her with Cushing's after five years of symptoms.
I wrote the journalist Jenna Rae on Facebook messenger:
Hello. I read your 9/2/19 article about Juliana Goode, the little girl with Cushing's. Thank you for writing it. I too had Cushing's, and I want to reach out to the family to plug them into a network of resources we have on Facebook and beyond. We have a group for people with Cushing's in Alabama, the South, as well as all the other 50 states. We have groups for parents of Cushing's patients (we call ourselves Cushies) and post op groups that help when hormone balance is very difficult after the removal of pituitary tumors. I have been a patient advocate for over 12 years and I have been a blogger for 11, writing over 500 articles about Cushing's. My site is www.cushingsmoxie.com. I also have a Facebook page https://m.facebook.com/fightcushingswithmoxie/. It is critical that I reach Kennie and James to help them navigate the many months of post op recovery that will be required for Juliana and all Cushies to recover. Doctors don't know what patients know, and unfortunately, patients have died listening only to doctors. It's my job as patient advocate to grab every Cushie I can find and place them into the safety net we Cushies have built for ourselves. I would be so thankful if you could pass this message along to Kennie and James. They can reach me here on FB.
Thank you so much for your help and for covering this story. We Cushies say that Cushing's is not a rare disease but it is rarely diagnosed. Doctors are taught in medical school that they will never see a case in their entire medical careers, so diagnosis is difficult. If you are interested in writing more stories about other Alabamans with Cushies or how this disease affects women 5 times more than men and how women are told to diet, lose weight, and exercise even though we have brain tumors, we sure need help telling our stories. We hope to catch even more patients who read these articles and see themselves in the patient stories. Thank you again!