Happy World Rare Disease Day TO ME! #raredisease

graves disease


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?


rare disease day

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:

  • Anxiety
  • Irritability
  • Difficulty sleeping
  • Fatigue
  • 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!



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  1. My father-in-law died suddenly from Idiopathic thrombocytopenic purpura a rare blood disease. We didn’t have any warning but luckily my husband was able to see him and talk with him (barely) before he passed. I am glad that your symptoms although probably very unpleasant were so obvious so you could get a correct diagnosis. While I wouldn’t wish anything on anyone, I am so glad that you are able AND willing to share your story for others as well as tell more about World Rare Disease Day. xo

  2. I don’t know how rare my disease is but I was just diagnosed with Lupus in August 2012. A lot of the symptoms you described are similar to those I have too. I can understand how difficult life, day to day, can be when your sick but still have precious responsibility in your hands. I wish you continued relieve.

  3. My mom was diagnosed in July with Myasenthia Gravis an autoimmune disorder that causes muscles weakness in any area of the body that does not connect to acetylcholine. It is where the acetylcholine receptors are not bonding and free floating that weakness occurs. It is a progressive disease with no cure but they treat the symptoms. My mom has stage One. Her vision is greatly affected and her independence has been taken away greatly. She turned 60 in November and her vision is either doubled or stacked or out of focus. You can’t get glasses b/c it changes with a blink iof the eye. She describes it as sharing binoculars with someone and you can’t re-focus them or she sees two of everything. It causes one eye to droop. She gets tired quickley and can’t drive because she can be fine one minute and see okay and then unable to focus the next.

    I love my momma. They are having a walk MG walk this Sunday and my Service Dog and I are walking. She is a trooper and is always grateful it has not affected her limbs, walking or swallowing.

    I love my momma and try to help her as much as I can. It takes a lot of adjusting. Simple things like going food shopping or going to TJMaxx are not that fun any more. But we are lucky she is at level one. I don’t pray but I have a good a feeling she will stay at level one and to progress. All the members of the support group started at level 3-5 and went to one. She started at level one and has stayed that way.

    Oh yeah, I love my momma.

  4. I had no idea! I think I’ve heard of this before, but have never known anyone with it. Thank you for bringing awareness. That takes a lot of courage and strength to talk about it!

  5. Thank you so much for sharing, Ellen! I cannot imagine how hard that was with 3 little ones at home! I also have a rare disease, but it only affects my right cheek and thankfully it isn’t dangerous on its own, it just makes me more likely to get other… Rare diseases!

  6. I guess it’s true, that you have no idea how strong you are until you’re forced to be. It sounds like you have been fighting for a long time, way before you knew what was wrong. I pray that God has his healing hands on you. My 12 grandson was diagnosed with Cystic Fibrosis when he was 2. We’re lucky that he is still very healthy. The worry and stress can take a told. May our Lord give you peace everyday.

    Hugs…Tracy @ Cotton Pickin Cute

  7. I had heard of this only a little bit and not in a meaningful way. Thank you for helping me understand it better. It is shocking how many rare diseases there are, that often many doctors, specialists, etc., cannot diagnose properly for years. We never know from one day to the next what may come upon us. May the Lord bless you.

  8. I came searching for your posts on graves disease ( From our instagram chat). It’s so crazy how much of the symptoms I have of graves. Literally all except for the eyes. My vision is really bad tho, don’t know if that’s linked but my prescription for contacts is -8.75. Pretty bad. Anyways I am so looking forward to an answer and feeling btr. We shall see. I’ll keep you updated! And if I have any questions I’m sure I’ll ask you 🙂

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