During this awareness month, we’ll continue sharing the stories of people who are having an impact on the community. We can’t find all the heroes, but here’s one, Sarah Holloway, who has learned a lot from her own struggles and the struggles of others.
Sarah Holloway – Sharing her Sight
by Jim Sliney Jr 8/25/17
Sarah Holloway is from Knoxville Tennessee and she was diagnosed with Gastroparesis in 2007, but her life with digestive tract paralysis started long before that.
As a child, Sarah was misdiagnosed with acid reflux and pancreatitis – conditions that are treated differently than gastroparesis. To further complicate her case, Sarah doesn’t have the most common form of gastroparesis (caused by diabetes), she has autoimmune gastroparesis. “Autoimmune” refers to the body treating a part of itself like a foreign invader that it tries to destroy. That’s a far cry from acid reflux. But Sarah doesn’t let it defeat her.
“When my symptoms aren’t too bad I like to keep myself busy. I do a lot of volunteer work at my local children’s hospital. I serve on the board of a local organization called VIBES, which is for visually impaired youth in the Knoxville area.” Sarah does light exercise too, like swimming and walking. “Staying active helps me take my mind off my illness. But when my symptoms are bad, I like to read, listen to music, or watch a good movie.
The thing that Sarah dislikes the most about her illness is dealing with doctors who don’t take her seriously. Part of the challenge of having a disease that is made of symptoms that a doctor can’t see or measure, is that it often leaves big gaps between a patient’s reality and a doctor’s interpretation of that reality. That might explain why it took 17 years to properly diagnose her, and it suggests the importance of finally having that formal diagnosis. In fact, research has shown that once a patient has a diagnosis, they report that they are taken more seriously.
Additionally, after the formal diagnosis Sarah was able to get access to a treatment that really helped her – intravenous immunoglobulin (IVIG). Sarah’s autoimmunity attacks nerves in her stomach, and “the goal of IVIG is to replace the “bad” antibodies that are attacking my stomach with healthy antibodies.” Since starting IVIG therapy she has more energy and her symptoms are much more tolerable. Slightly less successful, but still helpful, is her gastric stimulator. Neither of these treatments would have been available to her as long as her diagnosis was incorrect.
Getting diagnosed also helped Sarah come to terms with her illness. “I have learned to be grateful for the good days that I do have. I feel blessed that I am still able to live a fairly normal life, whereas some people with this disease can’t.” And knowing her disease has allowed her to get to know the community that has grown around digestive tract paralysis (that’s you, reader!). “I’ve become friends with some truly amazing people through the gastroparesis support groups.”
With all of her experience, we asked Sarah for some advice she’d be willing to share. Here’s what she said:
To new patients: “Speak up for yourself. If you feel that you are not being taken seriously or are not being treated properly, say so. And don’t be afraid to seek a second or even a third opinion if necessary.”
To someone losing hope: “Don’t give up hope. There are doctors and researchers who are dedicated to finding better treatments for gastroparesis. Also, know that you are never alone. You have a huge network of supports through G-PACT and other support groups, and we are all here for you.”
And since it’s Gastroparesis Awareness month, the thing she wants the world to know is, “Don’t judge a book by its cover. Not all illnesses are visible. Just because you can’t see it does not mean that we are not suffering.”
I guess it’s true that going through hardships like Sarah has, builds wisdom and character. Thank you for sharing that with us and with your community, Sarah. You’re not invisible to us – not by a long shot.
If you’d like to get involved with G-PACT, visit the website at https://www.g-pact.org/ . Donations to this Non Profit are tax deductible, but there are many ways to give.