The story of Torise
“Not Too Rare to Care”
Did you know that millions of people are diagnosed with rare diseases and unknown disorders everyday, especially women?
According to the FDA, around 30 million people in the United States have a rare disease, which is roughly 1 in 10 people.
Here’s my Story
My name is Torise. I was diagnosed with a rare disease that only affects 1% of people in America; May Thurners Syndrome/ Pelvic Congestion Syndrome (“MTS/ PCS”). which falls under the umbrella of Vascular Compression Syndromes. This is a rare disorder that causes the blood in your legs to flow downward instead of upward to your heart. For more information about the disease, https://www.cvmus.com/blog-categories/pelvic-congestion-syndrome.
https://www.cvmus.com/blog-categories/pelvic-congestion-syndrome
https://www.upmc.com/services/heart-vascular/conditions-treatments/nutcracker-syndrome
My unbearable symptoms began 4 years ago, beginning with pain in my back and gradually shifted to my shoulders, chest, legs and abdominal, weight loss, and fatigue, followed by body temperature changes, sweats, and fainting. I thought it was an autoimmune disease, however, stranger symptoms continued to develop and became more serious.
During the last eleven months the disease started to affect my entire nervous system, which has been debilitating at times. Since April, I have had 2 procedures and 1 surgery to get some relief. In the coming months I will be having another surgery and continue to go through further testing. We have a surgery date for July 12, 2024. However, we are believing in God for a sooner pending date of June 28, 2024.
This has been an extremely difficult time for me in more ways than one; physically, mentally, financially, and spiritually, on top of being misdiagnosed and bouncing from one doctor to the next, who has no clue about the disease or how to properly treat me. If it weren’t for me being my own health advocate, I believe it would have taken longer to be diagnosed or even cost me my life.
I am now preparing for my upcoming surgery [49 days]and visiting other specialists for further answers.
I dare to share my story in the hopes of helping to inform others about my disease, experiences with healthcare and perhaps promote advocacy and support of life-changing procedures for people suffering with my disorder or a similar one. Relationships are the catalyst for change and I am beyond grateful for my community of “Friends Who Care that are Rare”
Life and maintaining my work and business came to a standstill with the onset of chronic pain and doctor appointments. The unfortunate agony of any healing/recovery journey is doing it alone. Creating or obtaining a support system is a catalyst for endurance and success.
I can’t do this alone. I need your help and support on my journey to recovery.