September 24th may or may not hold meaning for you. For me, it signifies a day of awareness. A day or remembering the 12 years of my life with no definitive diagnosis for the cause of my failing kidneys, high blood pressure, low energy, and strange seemingly unexplainable clotting problems.
September 24th is aHUS Awareness Day. aHUS stands for atypical Hemolytic Uremic Syndrome. It is a disease where small blood clots form in tiny blood vessels throughout the body.
I became ill in 2001. Because aHUS is an ultra rare disease, meaning in the United States, fewer than 200,000 people are affected, it was very difficult for me to receive a diagnosis.
Finally around 2013, I received proper testing and thus a definitive diagnosis of aHUS was made. About 2 years after that, I began receiving the life saving treatment (not cure), Soliris, as a bi-weekly infusion.
Last week, I was fortunate enough to attend my first conference through the a HUS Foundation. It was a wonderful time of connecting with other patients and their families, learning about the disease and treatment from an experienced doctor, sharing stories of hope, and encouraging one another. My prayer was that God would use me to encourage even just one other person and that I would learn something new.
God didn’t waste any time at all…He never does! The very first family we met at the conference was a lovely family of a little 4 year old boy who had been diagnosed at 9 months of age. Simply introducing myself as the patient and mentioning that I first became ill back in 2001 was enough to cause their jaws to drop and say without filter, “And you are still here! Wow!” There you go, God, encouraging even just one person!
Many inquired about why I had never been to a conference before. With how much I enjoyed the conference, sitting amongst those who understand my life with aHUS, I had to really think…why had I never attended a conference before?
A big reason was probably all of the years of not knowing for sure whether or not I had aHUS. Why pursue learning about a disease I may not have?
Another reason was I imagined the conference being sad and depressing. I imagined sitting around listening to sad stories of suffering from people stuck in this disease. What I found was the opposite. I saw life! Children living their lives as children with aHUS: playing, laughing, learning, growing. Adults with families and careers living their lives as warriors. Family members spreading the word about diagnosis and treatment, learning all they can, fundraising, raising awareness.
As a group, we even attended Disneyland, the happiest place on earth! All of us connected by the same disease, laughing, enjoying our lives!
Awareness provides answers, diagnosis, and treatment. Take a minute to check out the aHUS Foundation website: aHUS Foundation
Here is a link to my story which I shared on Facebook: Facebook Live
Thank you for reading my story!