Meeting Face to Face

My first introduction to a rare disease organization was most likely in early 2016. I may not be sure of the date, but I know who it was to - Jennifer Knapp, co-founder and VP of Adrenal insufficiency United. I was a scared mom, who had just seen her 12 year old son on the brink of death be diagnosed with a rare, lifelong, life-threatening illness. While I was glad to have answers, it seemed that these answers still left us with a lot of questions....

Our pediatrician whom we loved, had never seen a case in a child (one adult case in medical school). The school nurse who we would be trusting with a good chunk of our son's time had also never taken care of a child with Addison's Disease. The children's hospital that he was diagnosed in is always ranked near the top of the nation in several disciplines and they found his case worth presenting to medical students that week! In the months that followed I found one other child in the state with Addison's Disease. To say that we were traveling a road less traveled was not an exaggeration.

Along with the rarity of Addison's Disease came challenges. Before leaving the hospital the adults closest to him were trained on an emergency injection. The hospital would also be calling the school to go through training on this injection with them. I know that most reading this are thinking - how hard can this injection be? They need to train a school nurse? The injection that is needed within 20 minutes of an oncoming adrenal crisis is 14 steps long! It is cumbersome and for some involves drawing up the solution with one needle and injecting with another.

Back to my phone call and introduction to AIU (#adrenalinsufficiencyunited)....I am sure that I sounded frantic and overwhelmed when I was actually speaking to another mom whose child had a form of adrenal insufficiency. When nervous I babble on and on, I can just imagine how many things I talked about being nervous about - how would we be prepared for this injection, how would we leave him at school, would he play soccer, what other illnesses could he get, how careful did we have to be.....would our lives ever be normal again?

One thing that stood out in talking that day was how much Jennifer and AIU cared about each patient and their caregivers. They are about providing support and education to those with any form of adrenal insufficiency (Addison's is just one form). One of the first things that I was told was to check and see what the protocols were in my area for administering self-carry medications. This went back to that 14-step injection needed for emergencies, in most areas self-carried medications could not be administered without a specific protocol (or statute) in place stating that an EMT could deliver it to a patient. This horrified me!! My son could then, be in an accident, need this medication, have it next to him, have EMTs available, and still not get his medication because they were not allowed to. I immediately found out that this was indeed the case in our area. I followed the suggestions of AIU and within five months of my son's diagnosis there was a statewide protocol for self-carry medications to be administered!

This here started a whole new chapter of advocacy for me with Adrenal Insufficiency United. I try to focus on helping parents of children new to this diagnosis manage the beginnings of it. This starts with making sure they are given emergency medications and know the protocols in their area. I try to help parents have health plans, 504s and IEPs in place so that children learn in a safe and effective environment. I spend a good amount of time moderating our groups on FaceBook that are very active and supportive. But the biggest thing we are doing right now is putting the final touches on our conference that happens later this month! I attended my first AIU conference in 2017 and it was the first time meeting other parents face to face who had been through the same rare illness journey as our family. There are so many who felt all the same feelings that I had felt prior, during and after diagnosis. We talked and we laughed and we cried...to this day I know that the time spent with that group of women changed me as a rare disease mom more than any time.

Thirty days from now we will be in the midst of our conference - the first one in three years. It will be three days packed with information, discussions and time to connect with others. Adrenal Insufficiency United is teaming up with Cushing's Support and Research Foundation for this conference, as both illnesses have commonalities of the adrenal glands being involved. This year's conference will be in Portland, OR March 30-April 1. In addition to programming aimed at patients and caregivers, we will also have a Kids Camp! We have sessions from a variety of experts in fields related to adrenal insufficiency at all ages, stages and forms.

In addition to attending the conference live, there are options for live-streaming some sessions. Please see www.united4rare.com to register for the conference in person or live-streaming. One thing that I can tell you being hands on working on this conference is that while we all now prices on everything are going up, donations for nonprofits are harder to come by - making events like this harder to do. But the value of these face to face interactions cannot be overstated - in a rare disease world, to bring people from around the country who have the same illness, same experiences together is priceless. For more information on the conference or how you can help, please see the attached update --- https://mailchi.mp/aiunited/30-days

In April I will update with all that this conference did for me and countless others. Until then, please share this with others who are affected by #adrenalinsufficiency or #cushingsdisease and maybe interested. If you have questions and or comments on this or any rare disease issue, please feel free to reach out to me!! I really want to make this new endeavor work and connect with more, help more and make a difference for more people!