#rare disease awareness

[evilwriter37]

Sharing some of my experience living with a rare disease. (And you get to see my adorable face.)

[snowfox102]

New pin/magnet designs in the shop! Viper and Pictomancer job stones, and an original design close to my heart: a zebracorn, for rare disease awareness/acceptance.

Available on Etsy!

[rotblumes-creation]

small sketch I quickly drew on the train back from my fam and just photographed with my mobile ..

I recently watched a couple scenes from the Animated Universe where lots of Characters have these Bodybuilder Proportions and I somehow had this picture in my head of Batman (as my fave) having to make himself really small (to hide or squeeze in&/through somewhere) with that kind of body build

I also recently had some comparison pictures in my social media feeds of the trend where people show their pets young and then grown (or they show their kids or adults show themselves as kids and a recent photo etc. pp.)

So, I felt the need to do a comparison picture of tiny (Not!Baby) Bats and ridiculously tall Bats and I went like

it's NOT GROWING up - it's STANDING UP

it then evolved into a sort of motivational poster along the lines of

DO IT like The BATMAN - stop hiding in the dark & stand up for yourself

and then I also felt the urge to draw the rainbow colors in his cape and added

show your true colors (even if it's black)

with the Rare Disease Awareness Motto in mind

share your Colors - show your RARE - show you Care

[frenchygv]

Today is Rare Disease Day. Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.

Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with rare diseases.

Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.

72% of the diseases are genetic and almost 1 out of 5 cancers is rare.

Relatively common symptoms can hide underlying rare diseases leading to misdiagnosis and delaying treatment. Quintessentially disabling, the patients quality of life is affected by the lack or loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.

The fact that there are often no existing effective cures adds to the high level of pain and suffering endured by patients and their families.

Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policymakers, industry representatives and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention. How can you take action? You can visit: rarediseaseday.org, globalgenes.org, and/or thelamfoundation.org, to learn more and donate. You can also help by reposting and sharing this post, thank you.

Hoy es el Día de las Enfermedades Raras. El Día de las Enfermedades Raras se celebra todos los años el 28 de febrero (o el 29 en años bisiestos), el día más raro del año. El Día de las Enfermedades Raras es el movimiento coordinado a nivel mundial sobre enfermedades raras, que trabaja por la equidad en las oportunidades sociales, la atención médica y el acceso a diagnósticos y terapias para las personas que viven con enfermedades raras. Más de 6000 enfermedades raras se caracterizan por una amplia diversidad de trastornos y síntomas que varían no solo de una enfermedad a otra, sino también de un paciente a otro que padece la misma enfermedad. El 72% de las enfermedades son genéticas y casi 1 de cada 5 cánceres son raros. Los síntomas relativamente comunes pueden ocultar enfermedades raras subyacentes que conducen a un diagnóstico erróneo y retrasan el tratamiento. Incapacitante por excelencia, la calidad de vida del paciente se ve afectada por la falta o pérdida de autonomía debido a los aspectos crónicos, progresivos, degenerativos y, con frecuencia, potencialmente mortales de la enfermedad. El hecho de que a menudo no existan curas efectivas se suma al alto nivel de dolor y sufrimiento que soportan los pacientes y sus familias. Aunque el Día de las Enfermedades Raras está dirigido por pacientes, todos, incluidos individuos, familias, cuidadores, profesionales de la salud, investigadores, médicos, legisladores, representantes de la industria y el público en general, pueden participar en la creación de conciencia y tomar medidas hoy para esta población vulnerable que requiere atención inmediata. ¿Cómo puedes tomar acción? Puedes visitar: rarediseaseday.org, globalgenes.org y/o thelamfoundation.org, para obtener más información y donar. También puedes ayudar reposteando y compartiendo esta publicación, gracias.

[random-art-stufffff]

Finally starting up a comic?..Well at the very least getting the start published and cross-posting between DA and here. Let’s see how all of this goes lmao..

[noisycowboyglitter]

Celebrate Rare Disease Day with Butterfly Heart and Zebra Ribbon Themes

Ribbon Rare Disease Awareness campaigns utilize specially designed ribbons to draw attention to a variety of uncommon medical conditions that often receive less public recognition and research funding. These ribbons serve as powerful symbols, uniting patients,

Buy now:19.95$

families, healthcare professionals, and advocates in their efforts to increase understanding and support for rare diseases.

Each rare disease typically has its own unique ribbon color or pattern, helping to distinguish and highlight specific conditions. For example, the zebra-striped ribbon represents rare diseases as a whole, while a light blue ribbon might signify Addison's disease, or a green ribbon with a butterfly might represent mitochondrial disease.

These awareness ribbons are used in various ways:

Worn as pins or badges

Incorporated into social media profiles and campaigns

Featured on promotional materials and educational resources

Used in fundraising events and charity walks

The primary goals of Rare Disease Awareness campaigns include:

Buy now

Educating the public about the challenges faced by those with rare diseases

Advocating for increased research funding

Improving diagnosis rates and treatment options

Fostering a sense of community among affected individuals and their families

Encouraging policymakers to address the unique needs of the rare disease community

By wearing or displaying these ribbons, supporters help spark conversations and raise vital awareness for conditions that might otherwise remain invisible to much of society.

"Butterfly Heart Believe Zebra" is a unique combination of symbols often associated with rare disease awareness and personal transformation. The butterfly represents change and hope, while the heart symbolizes love and support. "Believe" encourages faith and perseverance in the face of challenges.

Buy now

The zebra is particularly significant in the rare disease community, stemming from the medical phrase, "When you hear hoofbeats, think horses, not zebras." This reminds doctors to consider common diagnoses before rare ones. However, for those with rare diseases, the zebra has become a symbol of uniqueness and the importance of looking beyond the obvious.

This collection of symbols is often found on awareness merchandise like t-shirts, pins, or posters. It resonates with individuals affected by rare diseases, their families, and advocates, serving as a reminder of strength, community, and the ongoing journey towards recognition and improved care.

Butterfly Gifts for Mum offer a delightful way to show appreciation with a touch of natural elegance. These presents often feature charming butterfly motifs, symbolizing transformation and beauty. Options range from butterfly-themed jewelry like necklaces or brooches to home decor items such as cushions or wall art. For

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garden-loving mums, consider butterfly feeders or plants that attract these graceful creatures. Personalized gifts like photo frames or mugs adorned with butterflies add a sentimental touch. These thoughtful presents celebrate the nurturing and transformative role of mothers, making them perfect for birthdays, Mother's Day, or just because.

[awesomebeentheredonethat]

Reese's Story Part 2

Not many people knew what we were facing starting at 20 weeks into Amanda’s pregnancy. We prayed for healing. We prayed for miracles. We wanted so bad for God to show up in a mighty way and prove the doctors wrong.  In my humanness I could say that God failed me. Again in my human nature I could be mad and blame God for making us have to grieve this way…but I can’t… all I can say is  But…

[no-im-not-a-robot-stop-asking]

Happy rare disease awareness Day!!!

Reminder that rare diseases have less studies done on them, less available treatment and the diagnostic process can be a hellish 10 years journey of fighting with doctors to be heard,

and diagnosis can also be sudden and/or traumatic experience!!

All my love to people with rare diseases!

[neurodivergentbraingoblins]

Growing up I was told I was "unique", "one of a kind", "different", etc.

Then I learned that the traits I have are experienced by millions of people and have names! ADHD, Autism, OCD, seizures, hypotonia, dysautonomia, etc.

Then I was diagnosed with a rare genetic disorder. I was so happy because it meant I finally found "my people" only to discover that I am nothing like all the other people with my genetic disease.

I went right back to being "one of a kind" and "rare within rare". I finally got answers just to discover that the labels we so desperately crave don't actually answer anything.

My advice to people - stop putting so much importance on labels. Labels don't mean anything. The symptoms you experience are what matter. Symptoms can overlap and be identical between different disorders that are nothing a like. But when we hold labels above symptoms we will always exclude people who truly experience the same things as us.

And yes, I'm aware that this may seem like it contradicts my statement that self diagnosing yourself with my genetic disorder is rude. However, it doesn't. A genetic disorder is a mutation of a very specific gene on a very specific chromosome that is specific to each individual person. Just like a heart defect is a very specific condition that only exists in people who don't have a healthy heart.

My genetic disorder doesn't have a label. It is too rare to have a label. So instead, we focus on the symptoms because the symptoms are the only thing that can be controlled.

[aelianated-star]

Being loaded into an ambulance: Sorry am I ruining the vibe?

[planetary-pluto]

it's EDS awareness and i'm in probably the worst flare of the last year.

very aware over here.

ow.

[skellysstruggles]

My Battle With Connective Tissue Disease

Hi, my name's Alex, and this is my blog on Ehlers-Danlos Syndrome, and the life I live with it. I explain all types of procedures, treatments, problems, and woes of life with a connective tissue disease. If you or a loved one have any experience with a chronic illness, or if you are simply interested in the workings of an EDSer, follow me!

[frenchygv]

June has been designated Worldwide LAM Awareness Month (WWLAM) by the Worldwide LAM Patient Coalition. WWLAM brings together the global community in a collaborative effort to educate the world about the signs and symptoms of LAM, raise funds to support women living with LAM, and share our global achievements to inspire researchers and clinicians to optimize therapies and find a cure for LAM. 

Lymphangioleiomyomatosis (LAM) is a rare and progressive lung disease that primarily affects women and has no known cure. To learn more about LAM and donate, visit thelamfoundation.org. You can also help by sharing this post, thank you.

Junio ha sido designado Mes Mundial de Concientización sobre LAM (WWLAM) por la Coalición Mundial de Pacientes LAM. WWLAM reúne a la comunidad global en un esfuerzo de colaboración para educar al mundo sobre los signos y síntomas de LAM, recaudar fondos para apoyar a las mujeres que viven con LAM y compartir nuestros logros globales para inspirar a investigadores y médicos a optimizar terapias y encontrar una cura para LAM.

La linfangioleiomiomatosis (LAM) es una enfermedad pulmonar rara y progresiva que afecta principalmente a las mujeres y no tiene cura conocida. Para obtener más información sobre LAM y donar, visita thelamfoundation.org. También puedes ayudar compartiendo esta publicación, gracias.

[random-art-stufffff]

Issue #1 out of many; starting a new comic series. “Life with Motion Blindness” until I have a better name. Introducing Art, Braiden and Mom (in order of appearance) to the comic; any characters may be a parody of real life. Names, places, etc. have been altered to protect their identities. More of them are coming soon—at least one left to introduce!

[enden-k]

im so tired of being a sleepy boy

[awesomebeentheredonethat]

Reese's Story part 1

Have you ever had a day that was filled with grief and joy all in the same day?  Recently I had not just one such day, but two in the same week.  On Saturday February 11, 2023 we had a memorial service for our 8th grandchild who was only 14 hours old when he went to be with the Lord. This day was filled with grieving but also a joy knowing that Reese Edward was with the Lord. He was no longer…