Patient Story - Thyroid Eye Disease
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.
Find out from real patients what life with chronic disease feels like. The invisible pain, the insurance battles, and the hidden full-time job "being sick" entails, can feel like too much at times, and it is a weight you shouldn't have to carry alone.
It is so important that patients with rare and chronic diseases are heard. Follow patient stories detailing life with lupus, multiple sclerosis, thyroiditis, Thyroid Eye Disease, Chron's, RA, and other complex diseases.
Are you an infusion patient that wants to help shed light on the chronic disease journey? Reach out to the Infusion Access Foundation team at info@patientaccess.org so we can hear your story and help you find the right pathway to be really heard.
Infusion Access Foundation (IAF) is a community of patients united to protect access to treatments that you get at a clinic, such as infusions and injections. We support each other across all diseases and advocate with one voice that reaches policy makers.
Пікірлер: 18
It feels good to know I’m not alone.
I'm am experiencing TED at this moment and I'm so depressed because I hate to look at myself in the mirror and sunglasses are my best friend 😢😢
This is the best video I’ve seen to describe how it feels to live with TED. Having Graves is bad enough, but the diagnosis of TED is FAR worse. Thank you for your advocacy.
Thank you so much! I am in the inflammatory stage and trying to find treatment prior to my eyes bulging out. Frustrating and lonely!
Such an inspiration! Thank you for being brave enough to share your story, strong enough to overcome it, and passionate enough to make changes for others. You are a hero!
Thank you so very much for sharing your story, I have Graves and went to so many eye drs who did not know anything about TED, Finally I found a dr who told me about this infusion medication. So grateful! These last two years have been so very difficult
Thank you for sharing . my respects .
I was diagnosed at 30 and still my eyes are swollen and bulged out. It has been so awful for me mentally and physically also and im 57 now been through 21 surgeries its awful
I need help to i have grave disease god bless you
Hi, thanks for sharing your story. It started a year ago with sudden pain in the back of my right eye. Went to see a few eye doctors and they also said: dryness or migraine. I knew it was something else, we know our own bodies better than the MD s. Finally after several opinions w different eye doctors, I convinced one of them to order CT and it shows that I have thyroid eye disease, although the blood lab it shows all normal. The eye disease doctor mentioned about the infusion treatment every 3 weeks for the next 6 months. I am a guy in the 50's with no history in my family at all about this type of disease. Did you know anything about the treatment, how effective? I am just cared of the several side effects the treatment has. Thanks again Sebastian
I have been suffering from graves disease for 7 years now. Nothing has change. My health is just getting worse. I have been living on anti thyroid drugs but they dont seem to work. Im confused and scared. They say there are only two ways to remove. Surgery and radioactive iodine. In my country, our option is only surgery. But i am afraid of the surgery because I dont trust our own health system and doctors. I dont know what to do
@Mztrue87
6 ай бұрын
Change your diet I don't trust Drs either, they constantlt trierd to talk me into removing ny yhyroid gland but after reading books, that doesnt actually stop you from having it so cjose not to get it removed. When ever i changed my diet it went into remission, Drs would constantly say to me "the medication must be working" but i havent taken it in like 9yrs 😂
@xxx-205
4 ай бұрын
@@Mztrue87what did you remove from your diet?
@pattya4696
2 ай бұрын
Eat healthy foods. Take selenium and take D3 K2.
What was the treatment she got?
So what surgery did you have 😳🤷♀️
Will medicare cover this kind of cosmetic surgery?
damn love her assssssssssssssss