“Light the Night for Amyloidosis” is an awareness campaign created to draw attention to amyloidosis symptoms, diagnosis, treatment and hopefully a cure! Since ‘Amyloidosis Awareness Month’ occurs in March, we are asking everyone to light up their porch / entryway with red bulbs for the month of March.
We have also contacted many US landmarks and businesses to do the same in March 2021. Below is a list of the approved requests, along with the date the lighting will occur.
I am 44 years old and 4th generation living with hATTR. My dad passed away at 53 and my grandpa at 61. I’ve been around hATTR as long as I can remember. When I was little (5-6 years old), our family was giving blood samples to IU Med Center for research. It came into our family through my paternal Great-Grandmother. At 26, I confirmed my diagnosis via a genetic test and then at 36 via a biopsy.
Our variant, Ser84Ile, normally begins with neuropathy in the hands. That began with me in my early 30s. At 36 I had carpal tunnel release surgery, although the relief was short-lived. In my early 40s, my feet began to be affected. Today, I still have numbness and tingling in my hands and, at times, pin and needle pain in my feet. This year, at 43, we confirmed that there is cardiac involvement in my heart, thankfully the only organ involvement to date. While the functional impact is minimal to date, the disease continues to progress, as I saw it do in my other family members.
As for treatments, I have been on Tedgsedi since July 2018 and see the doctors at the Cleveland Clinic. One of the hardest parts about living with this disease, and actually most rare diseases, is you will have inevitably find yourself knowing more than local doctors. It is why getting to a hospital that has experience with the disease is so important. I have been so thankful for the knowledge and expertise of my doctors.
I have 4 boys (17, 15, 13, 11) so being involved in patient advocacy/disease awareness is critically important to me. While none of them have been tested yet, I am hopeful because of the treatment options currently available and those coming to the market! I have done patient advocacy work with Akcea (makers of Tegsedi) speaking to doctors, patients, and caregivers across the country. I am also getting involved in Rare Across America and will be speaking to my U.S. Senators and Representatives this Fall.
While a diagnosis like this is nothing you wish for, I am thankful for it. It has deepened my faith and give me clarity and focus to live a life of impact. I am a Leadership coach and public speaker. I share my story of hATTR to help others see that life is short. To remind people that what really matters is Relationships, Influence, and Impact. I use it to hopefully inspire others to live life to the fullest. I want them to live a life of meaning with their family, friends, work, and community. A life with hATTR has helped me do just that.