When I was diagnoses with Graves’ Disease almost 3 years ago I had no idea it came with it’s own day, how lucky am I?
In all seriousness today is World Rare Disease Day a day dedicated to bringing awareness to 7,000 rare diseases and disorders affecting 300 million people and Graves’ Disease is one of those Rare Diseases.
So what is Graves Disease?
According to the Mayo Clinic Graves’ Disease is an immune system disorder that results in the overproduction of thyroid hormones (hyperthyroidism). common symptoms include:
- Difficulty sleeping
- A rapid or irregular heartbeat
- A fine tremor of your hands or fingers
- An increase in perspiration or warm, moist skin
- Sensitivity to heat
- Weight loss, despite normal eating habits
- Enlargement of your thyroid gland (goiter)
- Change in menstrual cycles
- Erectile dysfunction or reduced libido
- Frequent bowel movements or diarrhea
- Bulging eyes (Graves’ ophthalmopathy)
- Thick, red skin usually on the shins or tops of the feet (Graves’ dermopathy)
I am one of the lucky ones who also has Graves’ ophthalmopathy which means:
- Bulging eyes
- Excess tearing
- Dry, irritated eyes
- Gritty sensation in the eyes
- Pressure or pain in the eyes
- Puffy eyelids
- Reddened or inflamed eyes
- Light sensitivity
- Double vision
- Limited eye movements, resulting in a fixed stare
- Blurred or reduced vision (rare)
- Ulcers on the cornea (rare)
I was fortunate in that my symptoms came on very suddenly and very strongly after my 3rd daughter was born. I don’t really remember much of the first year of her life as managing my disease really took precedence. The difficult thing with a disease like Graves’ Disease is that the symptoms can often be confused for other things. For me the fact that I had a thyroid 4 times the normal size really helped with my diagnosis, all my other symptoms doctors attributed to my having 3 kids, which was beyond frustrating. It took 3 doctors and some tests to determine my disease but once we found answers I was so relieved. My anxiety and depression were out of control and it was very difficult to even get through the day let alone care for 3 young kids.
Once I had a diagnosis due to my severity and the development of Graves’ ophthalmopathy several years prior it was determined that permanent action needed to be taken quickly. (I had a cornea ulcer 2 years prior but we did not know I had Graves’ Disease at the time). My choices were radioactive iodine or a total thryroidectomy, I chose total thyroidectomy. When my Colette was just 11 months old I had my thyroid completely removed, my thyroid was so big they feared I would suffocate when they put me under, it was crazy big I oculd not sleep on my back or I choked!
Well 4 1/2 hours later I awoke to no thyroid, it was so big we had some bleeding issues and since I could not go home until the bleeding stopped I was in the hospital for 4 days. I hardly remember those days other than my husband was there almost always and when he wasn’t my family was, I was never alone. I still remember my brother and his girlfriend ( now wife) sitting by my bed through the night watching Netflix on my laptop so my husband could get some sleep. It really was a team effort and I am so lucky I had family to help and support me.
Once I went home I could not really move my head much or hold my baby for a month. That was a really rough month but again family came through big time helping care for my kids, I am truly blessed. Now that I have no thyroid I had to make some major life adjustments since I have to take a daily pill to replace the thyroid hormones I am missing. It has taken a really long time to get my medicine adjusted and made for a complicated pregnancy with my fourth daughter.
While the task of getting my medicine regulated has been complex, I absorb at an unnatural and unpredictable rate, my Graves Disease has been successfully managed since my surgery and I would do it again in a heartbeat. My eyes are still a problem and I have random and unexplained flare ups often, it has meant giving up my contacts which has been hard (vain I know) and when yours eyes hurt it makes for a rough day. But last week I marked 3 months on the same dosage and that is a record for me, I am so so happy about this milestone. I am thrilled to think we may have finally found my correct dosage and have been feeling great lately.
So today on Rare Disease Day I challenge you to learn about a disease that you know someone has, take a moment to understand what they are going through. And then celebrate like I am, that modern medicine has made many of these diseases manageable!