April Awareness Brings May Actions

April was Adrenal Insufficiency Awareness Month. Many organizations had events and information in various formats to bring attention to this life threatening rare condition. But what happens when awareness month ends? For those of us living with or taking care of someone with the condition, we keep on going. Advocates persevere each day hoping to bring more awareness, bring change and make life better for those affected by it.

Hopefully for those affected by it who are stable it is a reminder of what this illness can mean. Not that we want to scare people, but we do not want people to become too comfortable either and forget to take care of themselves by following up with doctors, getting emergency prescriptions refilled and following instructions for updosing and stress dosing as recommended. For those struggling with their illness we hope that they got some information that helped them or ways to connect with others with similar struggles. We hope that they see they are not alone and that there are people who are not giving up and are always fighting for answers that seem elusive at times.

Advocates have spent a month working harder to bring awareness and also to bring more advocates into help us. There is always more work to do and awareness to be spread and the more people who help, the more people we reach.

Adrenal insufficiency advocates are working hard right now to make sure that everyone who needs solu-cortef (emergency injection and used in some pumps for daily meds). The manufacturer has cut production temporarily and has worked hard to get information out about it and how to work around it. Even with their precautions there is a lot of fear, since it is the most effective medicine to save someone's life in an adrenal crisis. And in some cases there are real problems with people getting what they need. In April I reached out to larger rare disease advocacy groups and my legislators for help. And I encourage anyone with issues to also reach out to their legislators - if you need help, I can assist.

Another thing that we are working on with that emergency injection is how cumbersome the administration of it is. Since our son was diagnosed in 2015 (and before that) there has been talk in the community of an auto-injector, instead of this 14 step process we currently rely on. There are a couple of companies with one in development, but again, we have heard that before and each time previously their plans have fizzled. We need this for every patient with any form of adrenal insufficiency.

Personally, I have worked on getting connections going among other parents with children with adrenal insufficiency. The support is virtual, but the connections that are made are real. There is another advocacy group that meets the first week of the month. So, with Adrenal Insufficiency United I have started groups weeks 2-4 - one during the day, one early evening, and then I had someone else step up to facilitate one later for those who that timing works best. I have worked hard to stagger days and times so that anyone who is interested can hopefully find at least one that works for them. Some think that these are just for parents new to the diagnosis, but as someone who is over seven years in I can tell you that I often get information and/or support on these calls to - they are for all parents with children at any stage of any adrenal insufficiency diagnosis.

As we enter the month after Adrenal Insufficiency Awareness Month, please remember that for those of us directly affected by it every day is a day of awareness. Every day we fight invisible battles and most of those are won without anyone even knowing that they exist. If you or someone you love has adrenal insufficiency or any other rare disease, I ask you to reach out, to share and to keep doing all you can to bring awareness and find support.