Chronic Illness

World Rare Disease Day: Around the Web

I was pretty active on social media for World Rare Disease Day, and I wanted to make sure that you got to see my posts too! If you aren’t already following me on social media, I would strongly suggest it. You can find me on both Instagram (@findinglifessilversun) and Twitter (@lifessilversun). I also have a Facebook page, specifically for my blog: facebook.com/FindingLifesSilverSun.

(All times typed in this post are provided in mountain time, which is my local timezone. I’m not sure what time stamps will display in the embeded posts, since I believe they will show your local time.)

Technically, I started my WRDD awareness the day before, on February 27th with this blog post, tweet, and Facebook post:

Then, I was having a high pain night. Since I was suffering from some painsomnia, I decided to go ahead and get the day started before I went to bed! (The Instagram post was done at 1:51am and the tweet was at 2:01am.)

Since I'm struggling with sleep thanks to my knee, let's kick off #WorldRareDiseaseDay 🎉 (It is 2:40am after all.) . As you saw in my previous post, I injured my knee on Sunday taking pictures that demonstrated my EDS/JHS for my blog! I sprained my MCL while doing a w-sit. This is actually due to my EDS/JHS. While I'm losing some of my flexibility now that I'm older, and since I'm doing a lot of stabilizing work in PT/Pilates, my joints are still "loosey goosey" and weak. I struggled to get into the w-sit, due to pain, but my knee wasn't able to stabilize itself to prevent injury. (It did actually pop quite loudly, but my knees pop a lot so I didn't think much of it.) . To learn more about EDS, and my other rare diseases/conditions, please check out my blog post! 💻 findinglifessilversun.wordpress.com/2017/02/27/wrdd-2017-my-rare-illnesses 💻 (The link in my bio will take you there for at least half of #WRDD2017, but I will be changing it at some point for another post!) . In total, I have four confirmed rare diseases. We are also leaning heavily towards another rare disease, but it hasn't been confirmed (the testing is quite difficult). This makes this image way too true! I'm rare!!! . Don't forget to wear denim today to show support for rare diseases! ... ... #CareAboutRare #WRDD17 #RareConditions #RareDisease #ChronicConditions #ChronicIllness #InvisibleIllness #MakingInvisibleVisible #EDS #EDSHT #EDS3 #EhlersDanlosSyndrome #JHS #JointHypermobilitySyndrome #dysautonomia #POTS #IST #EoE #EosinophilicEsophagitis #eosinophilia

A post shared by Elizabeth Bulfer (@findinglifessilversun) on

After I was able to sleep, I decided that I wanted to use my social media presence to showcase some of the rare disease elements of my life.

9:42am

🎉 #WorldRareDiseaseDay 🎉 This is how I wake up! My alarm goes off, and I grab my blood pressure (BP) cuff. . I usually do 2 measurements while I'm lying down: 1 right as I wake up, another after I've been lying down a bit. Then I take one as soon as I sit up, and usually another after I've been sitting a bit. Then I take one right after I stand up. . Throughout the day, I will try to remember to take my BP at least twice. I definitely take it when I start to feel any symptoms that may be related to either BP or heart rate (HR). . Then at night I do a standing BP, and a "as soon as my head hits the pillow" reading. If I'm feeling symptomatic, I'll do another one after I've been lying down for a while. . This is part of my life with #dysautonomia : a lot of BP and HR checks. Especially since I'm currently of my heart medications, in an attempt to reevaluate my conditions with my new cardiologist. He wants to be sure I was diagnosed properly (it sounded like he's thinking I wasn't). . I was diagnosed with #PosturalOrthostaticTachycardiaSyndrome and #InappropriateSinusTachycardia two years ago. My new cardio is thinking I may not have either of those, but he agreed I definitely have #OrthostaticIntolerance. So it's back into the "fun" that is the diagnosis journey. ... ... #CareAboutRare #WRDD17 #WRDD2017 #RareConditions #RareDisease #ChronicConditions #ChronicIllness #InvisibleIllness #MakingInvisibleVisible @globalgenes #POTS #POTSie #PosturalTachycardiaSyndrome #IST #OI #OrthostaticHypertension #OrthostaticTachycardia #hypertension #tachycardia

A post shared by Elizabeth Bulfer (@findinglifessilversun) on

11:42am

🎉 #WorldRareDiseaseDay 🎉 Currently, my diagnosis is #JointHypermobilitySyndrome but we're thinking it will likely be changed to #EhlersDanlosSyndrome as I have significant systemic involvement. #EDS is a rare disease/condition! . I do not get to see the geneticist until August, as he's the only adult geneticist in the state and apparently only sees patients 2-3 days a week. I made my appointment last August. . It's timing like this that make rare diseases so complicated for the patient! We have to wait years to see doctors that actually know something about our conditions, THEN we have to do testing and wait until we can get those results. Then we have to wait even longer to find treatments we can convince our insurance to cover and that may work. Sometimes, insurance decides what will work, and they're wrong, but we have to oblige them to prove ourselves. Finding the correct diagnosis and effective treatments can take YEARS! And, sadly, many rare disease patients will die in those years: undiagnosed or misdiagnosed and suffering. . This is why #WRDD2017 is so important! #CareAboutRare and help us make a difference! . (These photos show some of my #hypermobility "party tricks." I managed to sprain my MCL doing the w-sit - last photo - and am now stuck treating that. These "party tricks" often cause us significant pain to perform, and can lead to long term damage. I took these photos for awareness and to show the geneticist.) . Link in bio for more photos and to learn more about my conditions! ... ... #WRDD17 #RareConditions #RareDisease #ChronicConditions #ChronicIllness #InvisibleIllness #MakingInvisibleVisible @globalgenes #EDS3 #EDSHT #JHS #JointProblems #hypermobile

A post shared by Elizabeth Bulfer (@findinglifessilversun) on

1:34pm

🎉 #WorldRareDiseaseDay 🎉 Taking a break from the knee brace to ice again. My PT, Joleen, diagnosed my knee injury as an MCL sprain. It should get better with rest, bracing, and ice (and ice massages). She would have prescribed the use of NSAIDs, but I'm already on Mobic for my back. . I injured my knee due to my #hypermobility (see my previous posts), while trying to take photos of what my hypermobility allows me to do. This is why the "party tricks" are dangerous to perform. I wasn't doing them only to raise awareness, but also to present at my genetics appointment in August so I won't need to physically demonstrate. . This is reality for #EhlersDanlosSyndrome and #JointHypermobilitySyndrome patients. We get sprains and other injuries far more easily than the average person. Sometimes, these injuries can be quite serious. There is no cure for either #EDS or #JHS, which is why we need awareness! ... ... #WRDD17 #WRDD2017 #RareConditions #RareDisease #ChronicConditions #ChronicIllness #InvisibleIllness #MakingInvisibleVisible @globalgenes #EDS3 #EDSHT #JHS #JointProblems #hypermobile

A post shared by Elizabeth Bulfer (@findinglifessilversun) on

5:25pm

7:50pm

Throughout the day, I also shared some of my fellow Chronic Illness Bloggers WRDD posts on my Facebook page! The posts are all fantastic and definitely deserve a read!


To see more social media posts, not from me, related to WRDD this year:

Instagram hashtags: #WRDD2017#WRDD17#WorldRareDiseaseDay

Twitter hashtags: #WRDD2017, #WRDD17#RareDiseaseDay

One of my Chronic Illness Blogger buddies, that I somehow missed sharing her post on WRDD: “Being a Zebra” by A Southern Celiac


What were some of your favorite things to come out of World Rare Disease Day? Personally, I absolutely loved seeing everyone come together and positively shout about rare diseases! I know I learned a lot this year, and I hope you did too!

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