Rare disease is something you never think will happen to you. For Vanessa, her journey with adrenal insufficiency began in her teens. A history of endocrine tumors eventually resulted in the removal of both her adrenal glands. The adrenal glands make cortisol, and your body needs cortisol to survive. Adrenal insufficiency is a rare condition where your body doesn’t produce enough cortisol.
You probably think of cortisol as the “fight or flight” hormone that kicks in when you’re stressed. That’s true, but cortisol also has a lot of beneficial functions. It regulates your metabolism, blood pressure, and immune response. People with adrenal insufficiency take medications to replace the hormones, but they must carefully monitor their cortisol levels. Not having enough cortisol can lead to a life-threatening condition called an adrenal crisis. When an adrenal crisis occurs, you need immediate medical attention.
Vanessa never expected to have adrenal insufficiency, but she’s faced the challenge with courage and grace. She’s remained positive, adapted to her new reality, and learned to accept the support of family and friends. And she trusts MedicAlert to help her live the life that she wants to live.
Read Vanessa’s story of adrenal insufficiency here:
When I was eighteen, I was diagnosed with a tumor on one of my adrenal glands and surgery was scheduled shortly after. The procedure is called an adrenalectomy, which is the surgical removal of one or both adrenal glands – usually due to the presence of tumors. Performed at the University of San Francisco, the surgery was a success. I was sent home with a good prognosis – and assurances from my doctors that I’d be able to live my life as normally as I had been before this unexpected and unwelcome turn of events.
For many years, my doctor’s assurances proved true. I did lead a “normal life” and when I turned 30, I happily discovered that I was pregnant with my first child. During my pregnancy, my doctor noticed that my blood pressure was elevated. Because I had a history of endocrine tumors, he ordered a CT scan. The scan showed that I had another tumor, this time near my kidney.
From that moment on, my pregnancy went from being my own to more of a shared experience as I was monitored very closely by a multitude of medical professionals. Fortunately, my pregnancy progressed normally and despite all the added medical appointments and stress about my diagnosis, I gave birth to a beautiful, healthy baby girl named Nayeli.
I had a planned cesarean section and my doctors felt confident that I was strong and healthy enough to wait until I was fully healed before undergoing surgery yet again. So, about a month later, I was back in the hospital undergoing surgery to remove the tumor. Unfortunately, the procedure proved to be long, difficult and ultimately, unsuccessful. The doctors were unable to remove the tumor and it remains there to this day, requiring careful and constant monitoring.
My story doesn’t end there. In 2017, my doctors found that another tumor had developed on my remaining adrenal gland. We made the decision to remove the gland entirely. My doctors told me that while I could live my life without adrenal glands, there would be many challenges, including taking medications for the rest of my life.
With adrenal insufficiency, my body doesn’t produce necessary hormones – particularly in times of stress or illness. The lack of regulating hormones can lead to what is known as an adrenal or Addisonian crisis – a life threatening condition that results in low blood pressure, low levels of blood sugar and high levels of potassium. This situation requires urgent medical care and a very specific treatment – an immediate injection of high-dose cortisone.
As a result, my doctors advised me to wear a MedicAlert ID at all times to ensure my health history would be quickly relayed to medical professional should I ever experience a health crisis. An adrenal crisis can look like a lot of other conditions. My MedicAlert ID tells people about my disease so I can get the right treatment, right away.
Life with adrenal insufficiency can be difficult and it took a long time to learn to compensate and take care of myself. A large component of my self-care is wearing my MedicAlert ID every day. I started with one ID and now have quite a few of them – in different styles because I like the options and the variety, but I do like my bracelet the most.
My MedicAlert ID helps me feel safe in my busy life. It also provides peace of mind to my family and friends to know that I am protected when away from them. After everything I endured physically, I didn’t want to lose my freedom due to the fear of being vulnerable in a time of crisis. The MedicAlert ID has allayed that fear and has given me the confidence to continue to work full time, to travel and to go back to school. I am so grateful to all my family, friends and MedicAlert for supporting my independence.