At first glance, Rachel Gregory appears to be your typical 25 year old woman. With a contagious smile and joking nature, she looks fine. But behind that smile is constant pain.
In 2007, Rachel was diagnosed with Crohn’s disease. She diligently took her daily prescribed medication, but continued having pain in the upper right quadrant. The pain got so bad it landed her in the emergency room several times, and the doctors were sure it was her gallbladder. After months of testing, she was referred to the University of Virginia Medical Center, where she received even more labs, x-rays and scopes. Finally, a year after the pain started, she was diagnosed with Primary Sclerosing Cholangitis. PSC, as it’s commonly referred, is a rare, incurable liver disease that causes the bile ducts to become scarred, narrowed and eventually blocked. The only definitive treatment is a liver transplant, but even then sometimes PSC recurs.
Rachel moved to South Carolina in 2010 and immediately got established with a local specialist. He kept her on her current regimen of daily pills, but wanted to investigate further into the severity of the PSC. After an ERCP, a procedure in which a stent is placed in the bile duct in hopes to allow better flow and relieve some pain, Rachel and her family were told she needed a transplant. Even with the 20 pills a day, the disease was progressing quickly. An appointment was scheduled with a hepatologist at the Medical University of South Carolina in Charleston.
After a GI bleed and a week in the hospital, Rachel’s doctors advised her she could not continue working. She deserves to be enjoying life; hanging out with her fiancé and friends, traveling, going to work, doing things most 25 year old women don’t think twice about doing. Instead, she fights a constant battle with intense pain, episodes of confusion, chronic fatigue, and swelling of the legs and feet. Rachel continues to take over 20 pills a day, just to maintain some degree of normalcy. Most days simply showering and getting dressed is completely exhausting and requires a nap afterward. Things that the “average person” can accomplish in minutes take Rachel much longer.
What We Need & What You Get
Because Rachel lives 4 hours away, the trips to MUSC require her and her caregiver stay overnight in the area. She is also responsible for maintaining a minimum balance of $3,000 in the bank at all times for various expenses at the time of transplant. MUSC also states a minimum of $200,000 is needed in order to receive the surgery. Since Rachel is no longer able to work, she is depending on the kindness of family, friends, and total strangers. Several fundraisers have been held, and money has been raised, but not nearly enough to cover all of her expenses.
We would obviously love to be able to raise enough money so that Rachel doesn’t have to worry about co-pays, prescriptions, or any other bills during this stressful time. However, we’ve set a realistic goal of $4000, which is what we were able to raise with our first Indiegogo campaign – surely we can do it again! If everyone who read this sent in just $1, and forwarded the info to everyone they know, and they sent in just $1, things would snowball and we would have the money we need in no time!
If you decide to donate to our cause, you may choose to receive the associated “perk”. These are just small tokens of our sincere appreciation for your support!
Other Ways You Can Help
There are countless ways to help us “Share Her Smile!” Don’t worry if you can’t contribute monetarily; word of mouth is a very powerful thing! We simply ask that you help us spread the word, not only about our specific story, but about the importance of organ donation as well. People decide to register as an organ donor because someone asked them. “Don’t think of organ donations as giving up part of yourself to keep a total stranger alive. It’s really a total stranger giving up almost all of themselves to keep part of you alive.” www.DonateLife.net
Educate others about Primary Sclerosing Cholangitis and other liver diseases. The liver is the second largest organ in your body and plays a huge part in your health. Visit www.pscpartners.org for more valuable information.
Use “Good Search” as your go-to online search engine. Set your charity to PSC Partners and every time you search, we get 1 cent closer to a cure!
And of course, prayers and well wishes are always greatly appreciated!