#rare disease awareness

[chronicillnesshumor]

[tseecka]

I made a zine!

As you may know, February 29th (28th on non-leap years) is Rare Disease Awareness Day. This is a day of the year where we try to bring attention and education about any number of rare conditions that can affect the population, which are low on funding, research, and support.

My wife was diagnosed last year with Behcet's Disease/Behcet's Syndrome, a form of vasculitis which can affect every blood vessel in her body. It is a chronic and incurable condition. Since receiving her diagnosis, she has been on three separate medications (none of which have worked, and all of which have caused her to be varying levels of immuno-compromised). She has been in extreme joint and muscle pain nearly every day, which is not helped by the cold climate in our part of Canada at this time of year. On any given night, it's 50/50 odds on whether she can get a decent/full night's sleep. There is no physical relief. The disease has disabled her and, in general, negatively affected her mental health and quality of life.

My younger sister went through breast cancer treatment last year and while I would not wish that experience on anyone, nor would I call it anything close to easy, it has been somewhat remarkable to see the difference that it makes having a well-known, well-researched disease vs. having one that medical professionals haven't heard of, or need spelled out for them when they're making notes to your file.

She is my sweet bun, my soul mate and my literal best friend, and I can't do anything to help her. I can't bring her relief; I can't find a cure. But I can do a little bit to bring awareness, in the hopes that the more people know, the more attention we can bring this condition; much like the journey that EDS and POTS patients have been through in the past few years, sometimes visibility is key to having these rare diseases recognized, understood, and tackled.

I have made two copies of the zine available for download and print/distribution. The first one is scanned and resized to be printable on a home inkjet printer with standard margins; there will be white space at the edges of some pages, but it will fold evenly and the pages will be aligned correctly.

The second one is a scan of the full 8.5x11 original. It's very nearly edge to edge. If you have access to a printer that can print full bleed, this one has the better formatting and is more "accurate" to the original.

[awesome-wordspren]

Happy rare disease day!!

I <3 someone rare

[evilwriter37]

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

[strxwberry-swtichblxde]

education on nf1 fet me cuz its nearly rare disease day

nf1, or neurifibroomatosis type one is a progressive genetic disease/codition. it primarly causes tumors to grow on the persons nerves, but it has other side effect the person such as their height, head size, and cafe at lait (light brown birth marks) on their skin. it occurs in every 1/(3/4)000 births, making it one of the most common autosomal dominat disorders. another name for the conditon is 'von recklinghansen disease'

please send me more questions about this!

[frenchygv]

Today, February 28th, we observe Rare Disease Day, a global movement advocating for equity in social opportunities, healthcare, and access to treatments for those living with rare diseases. This day is celebrated on the last day of February, the rarest month. We call for action to ensure that individuals with rare diseases can fully participate in family, work, and social life. The long-term goal of Rare Disease Day is to achieve greater equity for the over 300 million people worldwide affected by rare diseases. To do this, we must advocate for fair access to diagnosis, treatment, and care, as well as comprehensive support for their everyday needs. The UN 2030 Agenda and its Sustainable Development Goals (SDGs) provide a vital framework for addressing the needs of this population. Countries can integrate rare diseases into their Universal Health Care (UHC) models and approaches (those which have it). It is possible to make great progress at a rapid pace even if starting from very little. Governments can focus on 1) extending coverage to people living with a rare diseases by promoting visibility, codification and diagnosis; 2) Including other services and adapting existing ones to the needs of the rare disease population; and 3) Protecting the rare disease population from further financial hardship.

Source: rarediseaseday.org.

To learn more about rare diseases and help visit: rarediseaseday.org and thelamfoundation.org.

___

"La Esperanza está en mis genes".

Hoy, 28 de febrero, celebramos el Día de las Enfermedades Raras, un movimiento mundial que aboga por la equidad en las oportunidades sociales, la atención médica y el acceso a los tratamientos para quienes viven con enfermedades raras. Este día se celebra el último día de febrero, el mes más raro. Hacemos un llamamiento a la acción para garantizar que las personas con enfermedades raras puedan participar plenamente en la vida familiar, laboral y social. El objetivo a largo plazo del Día de las Enfermedades Raras es lograr una mayor equidad para los más de 300 millones de personas en todo el mundo afectadas por enfermedades raras. Para ello, debemos abogar por un acceso justo al diagnóstico, el tratamiento y la atención, así como por un apoyo integral para sus necesidades diarias. La Agenda 2030 de las Naciones Unidas y sus Objetivos de Desarrollo Sostenible (ODS) proporcionan un marco vital para abordar las necesidades de esta población. Los países pueden integrar las enfermedades raras en sus modelos y enfoques de Atención Sanitaria Universal (CSU) (aquellos que la tienen). Es posible hacer grandes progresos a un ritmo rápido incluso si se empieza desde muy poco. Los gobiernos pueden centrarse en 1) ampliar la cobertura a las personas que viven con una enfermedad rara promoviendo la visibilidad, la codificación y el diagnóstico; 2) Incluir otros servicios y adaptar los existentes a las necesidades de la población con enfermedades raras; y 3) Proteger a la población con enfermedades raras de más dificultades financieras.

Fuente: rarediseaseday.org.

Para aprender más sobre las enfermedades raras y ayudar visita: rarediseaseday.org and thelamfoundation.org.

[southie187]

The last day of February is Rare Disease Awareness day and the month is also considered to be Rare disease awareness month.

It also happens to be the month that the love of my life was born.

Please, never take yall health for granted and be grateful for every healthy day you have. So many people out here are battling diseases you have never heard of, dealing with the physical and mental exhaustion, pain and often hopelessness that come along with it.

If you have the time, try to educate yourself about some of the rare diseases that affect millions. My wife had Scleroderma, Sjogrens, Raynauds etc. She passed away at the young age of 31, after battling her illness for 16 years. More than half her life was spent in and out of hospitals and Drs offices.

She was a person with dreams, goals, hopes and aspirations. When faced with the reality that many of things she dreamed of or wanted to do may not be attainable due to her declining health she shifted her energy to spreading awareness and being there for others who were fighting their diseases and who felt lonely and hopeless.

My goal is to continue to spread awareness and tell her story. I pray that with more funding and research eventually a cure or treatment will be found.

Peace and Love

[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

[chronicillnesshumor]

[tumble-tv]

HAPPY RARE DISEASE AWARENESS DAY!!!

I have uveitis, an eye condition that is comorbid to my JIA. This causes scarring in the backs of my eyes, and a flare can cause me to go completely blind. I have permanent damage in my eyes due to this, and it is significantly worse in my left eye. I was diagnosed in 2015, I believe, and have been in remission since 2021. While there is always a risk of a flare, years of medication have made that risk much much smaller than it originally was.

[cassandralexxx]

hey y’all!! It’s rare disease week and I’d appreciate it if you could help sign this petition <3

[emptygrav3yards]

February 28th is Rare Disease Day!

This Friday, February 28th, is Rare Disease Day. Please join me in recognizing people who have a rare disease.

In 2019, I was diagnosed with Granulomatosis with Polyangiitis (GPA). This is a type of vasculitis auto immune disorder. There are fewer than 200,000 cases of GPA in the US every year.

30 million Americans have a rare disease (10% of the population).

There are over 10,000 different rare diseases, all of which are chronic.

So many of these diseases require treatment that isn't FDA approved because of the lack of research.

The removal of key experts at Health and Human Services Agencies, including NIH, FDA, and CDC – paired with recent executive orders on federal funding and communications, compromises our nation‘s economic prosperity and threatens the foundation that enables hope.  For children and adults with rare diseases, even a momentary pause in funding for these programs and agencies will have devastating, life-altering consequences.  

Please consider signing a petition to Congress brought forth by the EveryLife Foundation for Rare Diseases! This petition asks Congress to encourage the President and Secretary of Health and Human Services to Support Steady and Robust Federal Agency Leadership, Federal Biomedical Research Funding, and Public Health Agency Support.  

To sign the petition in support of people with Rare Diseases, click here.

To find more info about Rare Diseases:

EveryLife Foundation for Rare Diseases

Rare Disease Day

RareDiseases.org

The Vasculitis Foundation (my rare disease)

Please Reblog, Like, and Share with friends & family! Spreading awareness for rare diseases has been very difficult, but it is necessary in hopes that someday we will have better research & treatment options for people with rare diseases (like me)!

[strxwberry-swtichblxde]

FYI your abilitst of your reaction to cases of nf1 is “this triggers my trypophobia” or whatever it is spelled like. You wouldn’t say that about well known conditions,

[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..

[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.