Rare Disease Day 2025
February 28 is Rare Disease Day
[I Support Rare Disease Day]
More than you can Imagine!
While the individual diseases may be rare, there's many of us with rare diseases!
- 300 - 400 million people are living with a rare disease
- About half of them are children
- There are more than 6000 rare diseases, and some state there are more than 10000
- 70-80% of rare disease are genetic
- 1/5 of cancers are rare diseases
- 95% have no approved treatment
Ways to Participate:
Learn about a rare disease
Talk to people and educate them about rare diseases
Check out the events at https://www.rarediseaseday.org/
Get Political. We need research and treatments developed for people and need inclusion of all backgrounds - inclusive of gender, sex, religion, ancestry, and nationality. Everyone deserves proper healthcare.
Can you name a rare disease?
Have you been affected by a rare disease (either directly yourself or indirectly)?
What are you doing for Rare Disease Day?
Sources:
https://www.rarediseaseday.org/
https://globalgenes.org/rare-disease-facts/
Learn more here
or message me https://www.7cups.com/@MistyMagic or https://www.7cups.com/@AffyAvo
@AffyAvo
nahoa rare ! Have 13q deletion and last year learn my kind epilepsy rare to 😮😮 extra rare 🧬
13q deletion different for every one have it because deletes different genes depend where deletion at
for nahoa is why am deaf have intellectual disability epilepsy autism adhd am really small for age 16 but people think am 8 or 10
nahoa epilepsy Lennox gastaut syndrome means have severe epilepsy that don’t go away with medicine and have since was baby for nahoa even with medicine take 3 times days have 20 to 40 seizures on good days 60 or more on bad days
@theboymoana
I think i got super lucky to get to know such a rare friend 😮🥺
Nahoa frined is rare and kind am so proud of you for fighting through all hard stuff in life n still manage to be kind and make everyone around you smile 💜❤️🩹 hugs to my super rare friend 🐑(⊃｡•́‿•̀｡)⊃
@Moonlight52
hugs friend💛💛thank you be so nice kind to me all time am glad you my friend😭💛
@theboymoana am gald nahao my friend too 💕💛
@theboymoana You are so so special and very rare to find such a lovely person!
@MistyMagic
thank you Misty is so nice say this 💛😭💛
@theboymoana Thanks for sharing! I hope there will be better treatments to reduce the seizures better.
A doctor has told me that rare conditions can cluster. It's difficult having more than 1 the curveballs are challenging!
@AffyAvo
me to seizures so hard for me with not exist
@AffyAvo Thank you for posting this, AffyAvo. I have a rare disorder called MPS. It's a genetic disorder. I've been recieving treatment since I was nine years old( now 30). I'm incredible grateful for the people my disease has brought into my life.
@WellsFiction I hope you had a great rare disease day. Hooray for the positive aspects like the good people around us!
@AffyAvo Thanks for posting this for us!
@AffyAvo
this is what we have Gastroparesis is considered a relatively rare disease, affecting an estimated 1-2% of the population
took them forever to find out this what we have over a year. the whole time we was throwing up many times a day too. got so we could not eat much. the only true way to find out if one has this is a nuclear test. they have you eay most times eggs with a nuclear tracer in it. then for 5 hours one time every hour they take a special type of xray to follow the eggs with the nuclear tracer in them. it tell them how fast the eggs move in stomach to go out of stomach. when it move very slowly one has gastpartesis. there only 2 meds to treat this and both have side effects that most get.
it can come and go so person not always have effected by this. one factor can be diabetic affecting the nerves that tell the muscles to crush the food in stomach. other things can be reason too. like neuropathy and fibro. sad thing is we have all them.
so it effected how we eat and well we can get pain in stomach and it effects other things too.
@stormieandpaws Thanks for sharing your experience. I'm gad you found out why, tht must have been worrying before you found out.
@AffyAvo
yes we was very worried before we found out. we also had many tests that could not seem to find out what was going on. so yes was very bad before we found out reason. the big thing was we could eat normal food again without getting sick.
Ehlers-Danlos is considered a rare disease.
I have the hypermobile subtype.
I also have POTS to go along with it, which is less rare but still not very common.
I deal with a lot of joint pain and inflammation. Along with dislocations and subluxations on a daily basis. This makes it hard to participate in normal life.
