findyourrare

[findyourrare]

Here are the 5️⃣things you need to know about the rare disease angelman syndrome

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1️⃣Angelman syndrome is a rare genetic and neurological disorder characterized by severe developmental delay and learning disabilities; absence or near absence of speech; inability to coordinate voluntary movements (ataxia); jerky movements of the arms and legs and a distinct behavioral pattern characterized by a happy disposition and unprovoked episodes of laughter and smiling

2️⃣Although those with the syndrome may be unable to speak, many gradually learn to communicate through other means such as gesturing

3️⃣children may have enough receptive language ability to understand simple forms of language communication

4️⃣Additional symptoms may occur including seizures, sleep disorders and feeding difficulties. Some children with Angelman syndrome may have distinctive facial features but most facial features reflect the normal parental traits.

5️⃣Angelman syndrome is caused by deletion or abnormal expression of the UBE3A gene

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Help us bring the invisible-visible ➡️ Like, share, save and comment a rare disease you would like to see highlight ⬇️

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#raredisease #rarediseaseawareness #angelmansyndrome #angelmansyndromeawareness #angelman #chronicillness #learningdisabilities #speechpathology #gesturecommunication #chronicillness #caregiver #disabledandproud #raremoms #rare #findyourrare #diseaseoftheday

Source🌐: https://rarediseases.org/rare-diseases/angelman-syndrome/

[findyourrare]

IT'S ALMOST HERE! Our Annual BWS Warrior Video is back and honestly out of this work this year. PREMIERS LIVE AT 12AM EST ..BWS Awareness Day Video 2022 https://youtu.be/Rfof0hKhwLg via @YouTube in partnership with @largerthanbws ..

#bw society #bws #zebra #genetics #raredisease #rarediseaseawareness

[findyourrare]

This rare disease day we have partnered with @the_valentine_project whose mission is to spread kindness one small act at a time. Anyone, anywhere, of any age, can become a Kindness Cards Partner and help cultivate compassion year-round to children affected by pediatric cancer or chronic illness . . Join us as we make kindness cards together this SATURDAY FEBRUARY 26th 2022➡️ to raise money for this amazing mission, do small acts of kindness, and celebrate the amazing rare disease community! . . You can expect to make 1-2 kindness cards, participate in games and connect with others around the world! . . DETAILS⬇️ Date➡️2/26/22 Time➡️11am EST- 3pmEST Location➡️Facebook findyourrare.info/cardparty Details➡️ Come anytime throughout the session and make a card with us! Those who RSVP (and attend) will receive an official Grow Awareness RDD22 event bracelet and sticker Questions➡️ drop them in the comments #bekind #cannabiscures #choosekindness #chronicillness #chronicillnesswarrior #chronicpain #chronicpainawareness #compassion #geneticdisorder #hope #invisibleillness #kindness #kindnesscounts #kindnessiscontagious #kindnessisfree #kindnessismagic #kindnessmatters #kindnessquotes #mcas #mentalhealthawareness #positivity #potsie #randomactsofkindness #rarediseaseawareness #rarediseases #selflove #spinalmuscularatrophy #spoonie #spreadkindness #bws

[findyourrare]

hey peeeps we are back with day sixteen fact of the day --> (swipe to read previous days) . . #healthcare #raredisease #rarediseaseawareness #rdd22 #rarediseaseday2022 #rare #findyourrare #healthcare #mentalhealthawareness #medicalsystem #advocate #raremom #zebrastrong #zebra #spoonielife #spoonie

[findyourrare]

hey peeps 🦓 we are here with your day four fact of the day ➡️ slide to see previous days facts . . change starts with us.👍 like, 📤share, 💾save,📲 follow🗣 start the conversation . . #raredisease #RareDiseaseDay #rdd202 #rarediseasefacts #raredisease #rarediseaseawareness #findyourrare #zebrastrong #zebralife #healthcare #congress #FDA

[findyourrare]

Despite this not being an approved @taylorswift collaboration for the disabled community this dynamic and toxic culture of over apologizing is something this community knows ALL TOO WELL 🧣

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If there is anything @taylorswift has taught me with her re-recording it is that the narrative is your own and you are not the product of other peoples uninformed judgements

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Okay so what do you do with that? I got you

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CUT 👏 THE👏 CORD

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It’s okay to let go of situations or people that can have a negative or draining effect upon YOU. Having unrealistic expectations of how others will respond continues the cycle and does not serve you

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You deserve peace. You deserve to come as you are without having to apologize or explain where you have been

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Drop your thoughts 💭 on the comment section below ⬇️

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PS. @taylorswift , You if you happen to be scrolling and see this. Thank you for giving me words when I had none. Thank you for being vulnerable enough to tell your story your way, it made me feel like I wasn’t alone which is something i I didn’t fully understand until becoming disabled. (And yes peeps i know it is RARE. that she would ever see this message however 1 in 10 people have a rare disease 🦠 🙃) and clearly I do not own any of the right to All To Well (any version) because @taylorswift OWNS 100% of her music 🖤🤟🏻🧣

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#taylorswift #taylornation #swiftie #alltowell #rarediseaseawareness #shortfilm #cutthecord #chronicillness #spoonie #mentalhealth #therapists

#findyourrare #raredisease #thisisrare #butyoudontlooksick #spoonie #zebralife #swifties #thegreaterthanproject #support #taylor swift #all to well #red season

[findyourrare]

I posted 29 times in 2021

28 posts created (97%)

1 posts reblogged (3%)

For every post I created, I reblogged 0.0 posts.

I added 46 tags in 2021

#findyourrare - 5 posts

#raredisease - 5 posts

#butyoudontlooksick - 5 posts

#spoonie - 5 posts

#taylor swift - 5 posts

#thisisrare - 5 posts

#support - 4 posts

#zebralife - 4 posts

#swifties - 4 posts

#thegreaterthanproject - 4 posts

Longest Tag: 21 characters

#thegreaterthanproject

My Top Posts in 2021

#5

Join us tonight on CLUBHOUSE for Advocates in Action with @wegohealth . . WEGO Health is a network of over 100,000 patient advocates and influencers working to transform healthcare. Join us as we dive deeper into the work we do to connect advocates with companies! . . Not on clubhouse? We got you ➡️ skip the wait and join the event using this link ⬇️ https://www.joinclubhouse.com/join/thisisrare/eMXI8tKy/Pv0Dq7DM

1 notes • Posted 2021-05-20 12:45:00 GMT

#4

Our FALL collection has dropped ➡️ findyourrare.com

1 notes • Posted 2021-10-10 17:44:37 GMT

#3

Vasculitis patients are SO lucky to have the Vasculitis Foundation. Most rare diseases do not have any organized groups fighting for them. I know this small, but mighty, group is saving lives by spreading awareness, fighting for research, and getting funding. One easy way any Vasculitis patient can also help make a difference is to participate in the Vasculitis Patient-Powered Research Network.

2 notes • Posted 2021-10-09 22:01:50 GMT

#2

Today and Everyday

2 notes • Posted 2021-03-09 02:30:19 GMT

#1

#endometriosisjourney #endowarrior #endo #endometriosisawarenessmonth #endometriosispain #chronicillness #endometriosisdiet #love #1in10 #mentalhealth #endometriosiswarrior #infertility #endometriosisuk #endobelly #ttccommunity #thisisendometriosis #endosisters #endometriosissupport #chronicpain #ivf #fertility #spoonie #endometriosisawareness #endometriosissurgery #fibromyalgia #pcos #womenshealth #infertilityawareness #health #invisibleillness

8 notes • Posted 2021-05-08 22:29:16 GMT

Get your Tumblr 2021 Year in Review →

#my 2021 tumblr year in review #your tumblr year in review

[findyourrare]

This week on Because We Are Strong . . . Heather Hutchison is an award-winning singer/songwriter and author of the new memoir, Holding On by Letting Go. She shares her story of life as a blind person both in Canada and Latin America, her struggles with anxiety and depression, the unique challenges of being hospitalized for psychiatric care during the COVID-19 pandemic, and the refuge she has always found in music. It is her story of choosing life.

[findyourrare]

There is so much to be grateful for even in the chaos . . Check out this episode with the RARE. team on all your favorite podcast streaming apps . .

[findyourrare]

Despite this not being an approved @taylorswift collaboration for the disabled community this dynamic and toxic culture of over apologizing is something this community knows ALL TOO WELL 🧣

.

.

If there is anything @taylorswift has taught me with her re-recording it is that the narrative is your own and you are not the product of other peoples uninformed judgements

.

.

Okay so what do you do with that? I got you

.

.

CUT 👏 THE👏 CORD

.

.

It’s okay to let go of situations or people that can have a negative or draining effect upon YOU. Having unrealistic expectations of how others will respond continues the cycle and does not serve you

.

.

You deserve peace. You deserve to come as you are without having to apologize or explain where you have been

.

.

Drop your thoughts 💭 on the comment section below ⬇️

.

.

PS. @taylorswift , You if you happen to be scrolling and see this. Thank you for giving me words when I had none. Thank you for being vulnerable enough to tell your story your way, it made me feel like I wasn’t alone which is something i I didn’t fully understand until becoming disabled. (And yes peeps i know it is RARE. that she would ever see this message however 1 in 10 people have a rare disease 🦠 🙃) and clearly I do not own any of the right to All To Well (any version) because @taylorswift OWNS 100% of her music 🖤🤟🏻🧣

.

.

#taylorswift #taylornation #swiftie #alltowell #rarediseaseawareness #shortfilm #cutthecord #chronicillness #spoonie #mentalhealth #therapists

#findyourrare #raredisease #thisisrare #butyoudontlooksick #spoonie #zebralife #swifties #thegreaterthanproject #support #taylor swift #all to well #red season

[findyourrare]

Hey peeps we are back for another episode of Because We Are Strong. This week we had the pleasure of interview @tribourne olympic athlete and myositis warrior . . Tri Bourne is a professional beach volleyball player, former professional indoor player and NCAA Division 1 Men's Volleyball player for the USC Trojans. He has been a part of the United States indoor and beach national teams since 2005. He was born on the Hawaiian island of Oahu, where he grew up. Tri's journey has been truly RARE. In 2016 the onset of a rare disease came and took Tri out of the game for nearly two years. Determined to make his dreams come true Tri fought back and found himself at the Toyko 2020 Olympics.

[findyourrare]

Our FALL collection has dropped ➡️ findyourrare.com

#findyourrare #thisisrare #butyoudontlooksick #raredisease #zebralife #thegreaterthanproject #taylor swift #support #swifties #spoonie #smallbuisnessowner #smallbusiness #shops #shopsmall

[findyourrare]

Until next time!-Felicia

[findyourrare]

Vasculitis patients are SO lucky to have the Vasculitis Foundation. Most rare diseases do not have any organized groups fighting for them. I know this small, but mighty, group is saving lives by spreading awareness, fighting for research, and getting funding. One easy way any Vasculitis patient can also help make a difference is to participate in the Vasculitis Patient-Powered Research Network.

[findyourrare]

Wegener's Vasculitis, renamed granulomatosis with polyangiitis, affects an estimated 3 out of every 100,000 people. Although the disorder can occur at any age, onset is usually between 40 and 65 years of age, affecting males and females in equal numbers. I was 31 at onset. Although looking back I can see signs of the disease bubbling up since I was 19. Many other Wegener's Warriors I have spoken to have the same. The disease was slowly building in us long before we could identify it. Here are a list of basic symptoms for Wegener's: Pus-like drainage with crusts from your nose, stuffiness, sinus infections and nosebleeds Coughing, sometimes with bloody phlegm Shortness of breath or wheezing Fatigue Joint pain Numbness in your limbs, fingers or toes Blood in your urine Skin sores, bruising or rashes Eye redness, burning or pain, and vision problems Ear inflammation and hearing problems Let me tell you, bleeding out of your ear is absolutely terrifying. The Vasculitis Foundation is doing an amazing job of spreading awareness and I am hearing more and more stories of patients getting diagnosed earlier because of it. If any of these symptoms match up for you. Don't be afraid to advocate for yourself and ask your doctor to run bloodwork! #chronicillness #wegeners #wegenersvasculitis #vasculitis #vasculitisawareness #autoimmune #autoimmunedisease #spoonie #spoonielife #spooniemom #butyoudontlooksick #wegenerswarrior #spooniewarrior #autoimmunewarrior #raredisease #rarediseasewarrior #prednisone #fightlikeamama #granulomatosiswithpolyangiitis

[findyourrare]

Hi! I'm Felicia and I have a rare disease called Wegener's Vasculitis. I live in California with my husband, two beautiful daughters and our first baby - a German Shepard named Kona. Follow along today as I share some of my journey and some information about my disease! #chronicillness #wegeners #wegenersvasculitis #vasculitis #vasculitisawareness #autoimmune #autoimmunedisease #spoonie #spoonielife #spooniemom #butyoudontlooksick #wegenerswarrior #spooniewarrior #autoimmunewarrior #raredisease #rarediseasewarrior #prednisone #fightlikeamama #momlife #momlifestruggle #prednisone

[findyourrare]

Invisible illness is REAL. i see you. #Findyourrare

#findyourrare #raredisease #thisisrare #butyoudontlooksick #spoonie #taylor swift #zebralife #swifties #thegreaterthanproject #support