Rayannes Forbes - A Graves Disease Journey

Patient Leader

Hi, I’m Rayanne! In 2010 I was diagnosed with Graves Disease. Like many others, I discovered there was very little information available on the Internet and even through my own family doctor to help understand what was about to happen to me. It began with my heart beating at over 200 beats a minute. I was hot when it was cold and vice versa. I became so weak I would have to sit down on the stairs half way up to rest. I would stay up for days and then sleep for 18 hours the next. Then the bigger complications started. My heart was so out of control that I was taking 19 pills a day, at a cost of $5,000 a year, to try and help it calm down. Little did I know these same pills would almost kill me. The pills helped one issue but created another by destroying nearly all my red and white blood cells. When I got a simple cold, I couldn’t fight it off and ended up so sick I had to be hospitalized. For nearly a month, I had to stay in reverse isolation under 24 hour care. This lead to doctors seeing my case was so severe that I needed an emergency thyroidectomy. By removing my thyroid, my heart rate would become more stable. Within mere months following my thyroid removal, I noticed my eyes started getting bulgy. I began seeing an eye specialist who put me on a wait list for surgery. Graves Disease eye symptoms have a 16 month period of change and you must wait the full length until you can receive surgery. In that time, I developed gallstones; a common complication associated with the illness and got it removed three months after diagnosis. After enduring months of painful eye symptoms, I received a double orbital decompression surgery to remove the extra tissues that had inflamed behind my eyes and caused swelling. While the surgery put my eyes back where they used to be, I was left with retracted ‘surprised’ looking eye lids, a common side effect of this operation. Shortly after healing from my eye surgery, the doctor invited me back to fix my wonky looking eyes. I was awake for the surgery and felt every needle and cutting on my face and the procedure was immediately cancelled due to discomfort. I am currently awaiting a new surgery date. I have also been tackling over $6,000 of dental bills to cover the devastation that this disease has done to my teeth. Most pills that treat Graves Disease symptoms cause dry mouth and lead to an accelerated rate of developing cavities; 14 in less than two years in my case to be exact. That’s where the idea to start a blog began. I knew I couldn't let anyone else feel as hopeless as I did. I learned through my journey that there needs to be more help for people with graves disease. If not for my family helping to cover my bills, I would have ended up homeless from this disease. I knew I couldn't be the only person who was going to go through this and decided I needed to do something to help others. My goal is to help other sufferers of this illness to raise awareness through my blog. I never set out to be ‘The Graves Disease Girl’ but I have met some wonderful people who have also been affected by this illness through my blog from around the world. I've always believed that the universe has a way of connecting those who are destined to meet via one way or another. And truth be told, I wouldn't have changed my path to have my life turn out any other way if I had the chance. Sometimes you have to just have to fight like hell and believe that everything is going to work out the way it’s supposed to be. Never give up. I hope you enjoy my blog; www.rayannesthoughts.blogspot.com !

Nominations

Rookie of the Year Health Activist Hero Patient Leader Hero

Finalist

Best in Show: Blog

I'm the Father of Rayanne Forbes. As we tell her 'this isn't your disease (Graves) Rayanne - it's OUR disease' and we'll all get through it as a true Family. If you've read Rayannes amazing blog - with 30,000 reads from around the world - you will see a carefully crafted description of what she has been through and what the rest of us have been through. Nobody is looking for sympathy but we're all looking for answers and what WE find out YOU find out via Rayannes very vidid and candid description. There's nothing held back. This is a painful recollection - both physically and psychologically - of what a terrible disease can do to you. Throughout the on going process Rayannes bravery is infectious and sends out such a positive feel that we are all extremely proud of her. An award for her work would certainly be a wonderful acknowledgement for what she has gone through.  — Marty

She is sharing her battle with Graves Disease with the hope of educating more people about this disease. It's a great site for newly diagnosed graves disease patients.

Yes it's my daughter. She is the most inspiring person I know. After 6 surgeries; with another one set, Rayanne has just been approved to open the Graves Foundation of Edmonton wherein she is raising funds to help others who suffer from Graves disease. Her blog now has been read close to 42,000 times from around the world. Incredible role model.  — Marty

Rayanne Forbes has the biggest heart I know. That must be why it beats so fast sometimes, it's too busy doing & caring for everyone & everything all the time. She never slows down, she shows her support in the worthiest of causes constantly. All at the same time she struggles on her own path. A path that has brought her down & torn her up. She struggles every day with her own issues but never stops thinking of everyone around her. She shines so bright with positivity for everyone even when she's having the worst personal days. She lends more hands than she has, & never asks for anything in return. I could spend days & weeks explaining why this amazing woman deserves this award, but anyone & everyone who knows her, sees why every single day. Whether it be in person, on her blog, on many social media sites, through her foundation or at work and the charities she is a part of. I don't know anyone more worthy of such gifts & awards. She helps people not only locally but reaches across the world to help!  — Stephanie

Rayannes Forbes - A Graves Disease Journey

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