Support Torise's Battle Against Rare Disease
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“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 Hiller. I am a daughter, sister, author, minister and, friend. After a long battle to discovery, a few months ago, 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. It seems simple, but its not. The main artery and vein responsible for your entire body is faulty. (basically doctors told me my anatomy is wrong)
For more information about the disease,
My unbearable symptoms began 4 years ago, although since the age of 18 I have suffered with invisible pain. Recent symptoms 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. I silently suffered for a plethora of years getting diagnosed with IC, CF/ME, Fibromyalgia, Endometriosis not knowing my journey would arrive here. I was silent partly because I just got used to it. Additionally, I am naturally a private person/ use to being strong most of the time with God's help. Also, with so much going on in the world I did not want to be a burden on others. I am daring to overcome my fear, pride & dare to create community to help me in this fight for WOMEN and others.
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. Unfortunately, with the lack of information available for this rare disease, doctors are not providing proper care or concern. Many of us are receiving improper advise, procedures or wise counsel in this process. Our bodies and female organs matter and this disease impacts ALL of it. My last surgery has left me devastated for support to undo the medical trauma of receiving bilateral illac vein stents which are wreaking havoc on my insides and legs making it more difficult to function prior to surgery. The daily severe pain is incredible and I am seeking additional support from physicians in the US and in the UK. There is one Doctor in the UK and in Germany who specializes for this stage of my Healing journey. It seems oversees doctors are more advanced in treatment with Vascular Compression Syndromes, GI & Endometriosis.
In the coming month [49days] I will be having another surgery and continue to go through further testing for divine recovery and relief. We have a surgery date for July 12, 2024. However, we are believing in God for a sooner pending date of June 28, 2024. I need your help!
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 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"
I can’t do this alone. I need your help and support on my journey to recovery. You may be asking yourself, how can I help? I’m glad you asked.
You can support in the following ways.
Purchase books/ products from my website; Click here https://beacons.ai/toriseapt111
Make a donation of $20, $50, $100 or any amount;
(These funds will be used for MEDICAL expenses and additional supplemental treatments & resources)
Purchase items from my Amazon registry@ click here
To Rise Healing Circle
In the coming days, look at my story on the following platforms. http://www.tiktok.com/t/ZTLGuqrqN/
/rarediseases.org
Prayers and petition for Divine Healing, Reversal & Deliverance, and for extraordinary favor with the best medical team, practitioners who will Advocate for me/ us.
Join us for an upcoming fundraising event (details to follow soon).
From the very bottom of my heart, Thank you again for your generous donations that will help save & provide better quality of my life for me and many other young women through the gift of Advocacy.
Torise
Organizer
Torise Hiller
Organizer
Lyndhurst, NJ