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PATIENT SPOTLIGHT

Andrea:

Unmasking Thyroid Eye Disease

October 11, 2022
5 min read
 
Andrea was diagnosed with Grave’s and Thyroid Eye Disease (TED) in 2016. It took her almost seven years to regain her health and get her life back on track. Thanks to new treatment options and therapies she is now able to live her best life. The journey to get there however, was not an easy one. She has lived through the pain, frustration, confusion, and loneliness that are all associated with a disease diagnosis. She shares her story today to help others along their journeys and bring about meaningful change.
Why I Share My Story:
Two years ago, being in front of a camera was my greatest fear. Back then I could hardly even look at myself in a mirror. Sunglasses became like a coat of confidence that I would wear everywhere I went. Perhaps the saddest and most frustrating part was that I was told over and over again there really wasn’t much “they” could do, and I lived this way for several years. It was such a painful and lonely time. I thought that I would have to live this way for the rest of my life. But it’s amazing how quickly your life can change in just a few short years. Today, I feel more confident and inspired to share my experience because I want others to know it is possible to overcome the burden of disease and get your life back.
How it Began:
About seven years ago my life was turned completely upside down when I was diagnosed with an autoimmune condition known as Grave’s Disease. My dreams of pursuing pharmacy school came to a dead halt, and I had to suddenly learn how to live a new normal and pursue ‘optimal health’ instead. My disease crushed my sense of confidence and for many years I struggled to speak about it. I spent several years avoiding mirrors and cameras. Looking back, I rarely took any photos without sunglasses on because I was so ashamed about the way that I looked.
Grave’s Disease
Grave’s disease throws your thyroid into overdrive and causes all kinds of alarming symptoms such as rapid heart palpitations, anxiety, hand tremors, sleeplessness, mood swings, and extreme weight loss. You feel like you are on the wildest rollercoaster ride of your life. You can’t think, sleep, or even breathe normally. But Grave’s disease doesn’t just stop there. Very often Grave’s disease patients also receive a second diagnosis of Thyroid Eye Disease (TED). TED is a separate, but related, autoimmune condition that affects a person’s eye’s and causes very noticeable and sometimes severe alterations to your overall facial appearance.
My Symptoms
I first began noticing the changes to my appearance shortly after I was diagnosed with Grave’s Disease. I would look in the mirror and I just didn’t recognize myself anymore. My eyes would swell, and my lower face took on a round shape. The facial disfigurement was extremely heartbreaking but the saddest part about it was that I was told by so many physicians that there was little that could be done to restore my appearance. I worked and continued to try to live a normal life all while secretly dealing with the physical and emotional pain that I was experiencing from having the disease. The symptoms of TED can be excruciating. It would get so bad that sometimes I would have to take breaks while working just sit in my car and cry.
Limited Treatment Options
In addition to not having viable treatment options available, one of the most difficult aspects of a disease diagnosis is learning how to navigate a very complicated and uncoordinated health care system all while managing these very painful symptoms. At first, I had no idea where to even begin. When you are diagnosed with a complex disease it is usually necessary to receive care from multiple providers. This can create so much confusion for the patient, especially if providers don’t communicate as a team to help the patient better understand how to regain their health. On top of that, you also need to understand and navigate convoluted payer systems that so not necessarily have knowledge specific to your complex disease.  As a patient, you must first learn to advocate for yourself to piece together this giant puzzle. We hear so often how broken our health system is, but I truly didn’t understand how disconnected it all was until I became a patient myself.
The Power of the Patient Story
The patient story reveals gaps in our fragmented healthcare system in hopes that various healthcare stakeholders will start to really listen and come together to find real solutions to help patients take back their lives. If we could find ways to reduce the time from diagnosis to optimal health in all diseases just imagine how productive society would be then?
We might not have the power to completely prevent disease (at least not yet), but we certainly have the power to begin to heal and manage disease symptoms much more efficiently. When patients share their stories, they put their battles into words in ways that transform lives.
Finding Strength Through Words:
I believe that sharing the patient experience and journey not only helps others by spreading awareness, it also is part of the healing process. However, it is often very difficult for patients to face the reality of a disease diagnosis and speak to its impact. For me, I had to start small by writing poems so that I could just get my feelings out on paper. It was a small step in learning how to cope with these difficult emotions, but a very important one in helping me gain the confidence that I now have to share my voice.
While my experience as a patient is a continual journey, I’m so grateful that I finally had the chance to receive the care that helped me be me again. I wouldn’t be here today without it. Seven years ago, I didn’t think I would ever even look like myself again. I was completely hopeless at that time. But now I sit here today as the best version of me.
Now I’m finally ready to take off my shades and share my story.
 

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