Without a Crystal Ball

Our Journey through Chronic Illness & Autism

 

Adrenal Insufficiency United 2

 

Today I have very big news to share. Over the past few years, I have worked in building advocacy and awareness for children with Adrenal Insufficiency. While Von has many diseases, this one is the closest to my heart. Adrenal Insufficiency is the disease that caused Von to nearly die 3 years ago. Since this occurred, I have been spending my time and energy researching, learning, and sharing our story. I have been able to speak at fundraisers, publish articles on large international websites, and now I’m going to be doing something I’m most proud of.

Over the past few years, I have been able to establish an online friendship with one of the founders of Adrenal Insufficiency United. This organization has been integral in helping me provide literature to friends, family and nurses, videos, and magnets for our car that indicate Von is steroid dependent. I have been active on their Facebook support groups in learning, supporting and sharing our story. I’ve learned that Adrenal Insufficiency is very broad in the causes, but the treatment and how our children feel on a day to day basis is the same. The symptoms and illness our kids face for many parents is difficult to witness. Many of our children are easily fatigued, have leg and joint pain, have dizziness and weakness, and in crisis can be rendered unresponsive and unconscious.

Through all of the time I have spent learning, advocating and researching I have really grown tied to the cause of helping parents understand how serious this disease is for our children. The primary reason there is such debate on the severity is that some children haven’t faced a life threatening crisis. I feel this is where I can provide valuable insight to parents who are questioning and wondering what a crisis can be like for their child. As my personal blog has grown along with our audience, Jennifer Knapp reached out to me to ask if I would be interested in being featured on their page. In this process, I would write blogs on our experience with Adrenal Insufficiency and share on their support pages.

Adrenal Insufficiency

I noticed very quickly that these stories and experiences were resonating with both adults and parents. The fact is there just aren’t a lot of people blogging about Adrenal Insufficiency. There isn’t a lot of awareness about this disease, and our goal has now turned to something greater. I have been asked to be the first member of their blogging team. Adrenal Insufficiency and I will be working on bringing the human experience to  their page. I will share stories, experiences, provide resources and hopefully help parents and adults understand the seriousness of the disease.

The goal is simple that no one should die from Adrenal Insufficiency. Right now there is a lot of work to do. Every year children and adults are dying from this disease for various reasons. In children the disease is difficult to diagnose. In newborns, like my son, there is no way to test secondary adrenal insufficiency. The only way Von was diagnosed was via a full crash that rendered him on life support for a week. Even primary adrenal insufficiency is difficult to test and diagnose. For adults, many are diagnosed after the development of secondary adrenal insufficiency or primary adrenal failure.

Adrenal Insufficiency is a rare disease, and the debate on treatment and what causes a crisis is highly debated by not only patients but by endocrine doctors.  What we do know is that any patient with this disease that is in crisis needs an emergency injection of the steroid Solu-Cortef. However, most states and health systems have no protocols to administer the drug, and ambulances do not carry this drug. For many individuals with this disease, a simple call to 911 can create confusion with paramedics and EMS professionals. Drugs are not administered often on time, and this can create situations that are extremely dangerous for patients. Once patients reach the ER, there is also no standard of care in management of the disease. This year we have witnessed a child die from the disease after an ER doctor refused to administer Solu-Cortef. These stories happen far too frequently. When Jennifer Knapp recently met with Pediatric Endocrinologists they admitted that on average they lose 2-3 children a year to Adrenal Insufficiency. This needs to change.

As we work toward bringing a more human face and voice to this disease, we hope you can help us with the goal of advocating for change for patients. Patients of AI deserve health care that understand how to treat them. We cannot do this alone, and will need your assistance in reaching out to legislatures, signing petitions and making noise as we fight for patient safety and rights. No person with this disease should fear going to a hospital and having to fight for them to give them life saving medications. We are going to work tirelessly to build awareness and advocacy for this disease. We will work diligently on pushing for a standard of care, and we need your help to do this. Please help us on this journey by subscribing to our blog, sharing our stories, signing our petitions and using your voice to change the system.

You will continue to find me on Without a Crystal Ball, The Mighty, Firefly Friends, and SNAP – Special Needs Advocates and Parents. I am so excited to have this opportunity, and I look forward to sharing my experience, Von’s experience, and our stories with a wider community.

 

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