rarediseaseawareness

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    Symptoms Worsening #RareDisease #TheMighty #MightyTogether #IIH #IdiopathicIntracranialHypertension #Migraine #IntracranialHypertension

    Champions adjust, and I am currently learning this the hard way but that's okay. I have my faith and my support system. I try to count my blessings. I started having blackouts. I can't ignore it. I see spots and sometimes can't see anything. I constantly feel the pressure in my head now the lowest it goes is a 6, sometimes I get random stabbing pains in my eyes. I've been getting episodes of weakness where I feel lightheaded and dizzy and I lose my balance, it makes me concerned that I will pass out, especially since I'm still working full time as a Medical Receptionist. My vision has worsened. My glasses are now too weak of a prescription. I go to Lens crafters Saturday thank God. I can't drive, which I never really did to begin with besides practicing. I realized this when my husband told me "don't feel bad because even if you wanted to drive I wouldn't let you right now because I'd be afraid of what could happen if you have an episode on the road." It never even occured to me until now. I count my blessings daily. I'm alive I'm fighting. We will find a cure. We will not suffer alone. 👊🏽 #IdiopathicIntracranialHypertension #IntracranialHypertension #RareDisease #ChronicIllness #ChronicPain #ChronicMigraineSyndrome #Migraine #PsuedotumorCerebi #rarediseaseawareness #TheMighty #MightyTogether #CheckInWithMe #mightystrong #ChampionsAdjust #StayStrong #CheerMeOn #grateful #TheLittleThings

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    Almost died… again.

    Yesterday was a really mixed day, I had a great time chatting with and slowly working on stuff on the other side of the house (I just moved in to my new duplex, where I live on one side and my family the other) with my amazing partner and two friends. I am truly blessed to have such great people in my life. 💜

    I have been pushing very hard with both getting my new house ready and getting my old house ready to go on the market to sell it. After my friends left though, my body decided it was time to shut down and I had a pretty scary medical crisis; luckily, my partner is very good under pressure and we were able to handle it. I don’t know though what would have happened had I continued to push today as I have been. 18 hour work days for a healthy person is a lot, never mind in this body. It is hard to accept dying, but dying by wasting away is harder than I thought. My muscles are eating themselves and my bone mass is going as well; my ankle foot orthotics, knee braces and ring splints don’t fit anymore because I am literally wasting away. I just touch something and my skin bruises and tears. My parts don’t stay in place (Ehlers Danlos); my fingers/toes/ribs/knees/hips sublux daily. My bloating is so bad that my skin/tissue is tearing on the inside. My pain is chronic and getting more intense. My heart and lungs are struggling and declining in function. That is just a sampling of all that my body is serving up. My body is saying no thank you and that sucks. I am stubborn and still want to do all of the things that I used to be able to do, but I can’t, and when I try, the consequences are very real. Deadly real. I want to enjoy this beautiful new home I have for as long as I can get. Years, not days. So I have set out a plan to use timers to take breaks and have people holding me accountable.

    As always, life is more good than bad. Despite all of the challenges, I consider myself incredibly lucky. I have amazing people in my life, awesome dogs, I am surrounded by beautiful nature, good food, great books, and new adventures to be had.

    Thank you to all of you have chosen to follow me on this difficult journey, I know it’s not easy. I feel so blessed and loved. 💜

    #Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PTSD #FunctionalNeurologicalDisorder #Migraine
    #Asthma
    #CeliacDisease #MitochondrialDisease #MastCellActivationDisorder #Trauma
    #RaynaudsDisease #MentalHealth #Depression
    #Anxiety #ChronicPain
    #ChronicIllness #Disability #dying #RareDisease #rarediseaseawareness #Chronicpainwarrior #ConnectiveTissueDisorder
    #deathanddying

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    When Will Health Insurance Companies Become Inclusive To Rare Disease Patients?

    I was told after the third appeal by my doctors that my health insurance company will not approve the ONLY treatment that is available for my neuromuscular autoimmune condition because “it’s currently not on their list”.

    They could simply “update their list” to be #inclusive and medically accurate, but they refuse to give it a second thought, even with my doctors telling them, “It’s the gold standard of treatments.”

    Without insurance the treatment is upwards of $9,700+ each, which I need monthly.

    My condition continues to progress. It’s already #disabled me and I use a power #wheelchair now because walking is so painful and difficult and it’s enveloped my entire nervous system now creating a blockage in my heart.

    I’m only 31 with a full life ahead of me.

    At what point will I be able to simply #access a treatment option that even the NIH had successful clinical trials for?

    What legal way is there to conquer this?

    #healthinsurance #clinicaltrials #inaccessible #accessibilitymatters #accessibility #medicalcare #immunotherapy #marginalized #zebracare #RareDisease #rarediseaseawareness

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    I'm a Warrior

    #chronicillnesswarrior #gastroparesisawareness #socialhealth #patientadvocate #TPN #rarediseaseawareness

    Yesterday I had several procedures done 3 hrs from home. This picture was taken on my way. I have Autonomic Dysfunction which causes many issues. I had to have my esophagus dilated again, an endoscopy to recheck a gi bleed, g tube for venting switched out, and colonoscopy due to polyp history. Thank goodness no more polyps this time. My throat is sore, but will get better. My g tube button was starting to become buried, according to the dr. My colon was significantly tortuous. Will be seeing a colorectal surgeon soon to discuss options. Make it a great day everyone!!

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    Rare Disease Day 2022 Part Two #RareDisease #rarediseaseawareness #NORDRareDiseaseDay #rarediseaseday2022

    It is difficult to define what constitutes a “rare disease” because the definition varies broadly, usually by country or region. In general, a rare disease is any disease that affects a very small percentage of a given population. An estimated 72% of rare diseases are genetic, or congenital, frequently affecting people throughout their lives (rarediseaseday.org); many of these diseases present at birth or in infancy and an estimated 30% of children with rare diseases will not live to see their fifth birthday (SIOP Europe). It is estimated that between 3.5-5.9% of the world population will be affected by a rare disease during the course of their lives (rarediseaseday.org). Rare diseases are usually chronic, disabling, progressive and degenerative, as well as frequently life-threatening: Furthermore, the very nature of rare disease is isolating, necessarily. Rare Disease Day and its backing organizations aim to acknowledge these points as realities by addressing them on the global stage: By doing this, people fighting the same rare diseases can be brought together from diverse geopolitical backgrounds to fight toward empowerment and equity as a unified and powerful force.

    Rare Disease Awareness Day is integral not only for raising awareness about rare diseases but also for bringing all of humanity together for the improvement of hundreds of millions of lives. I personally struggle with several potentially life-threatening rare diseases and I agree very much with NORD that although we are “rare alone,” we are an unstoppable force when we all work together. You can find much more information about Rare Disease Awareness Month and Rare Disease Day by visiting rarediseaseday.org. You can also visit NORD at rarediseases.org to find additional resources including a searchable rare disease database. Information about the 16 aforementioned “Rare Disease Community Heroes” is also featured on the Rare Disease Day website where you can also find remote or local events leading up to and on Rare Disease Day. This website features an immense array of resources, including information regarding the 2030 UN Rare Disease Health Initiative and even information about how the public and private sectors as well as individuals can light their buildings and homes on February 28 to show their own colors and join together in both strength and solidarity in this important global movement.

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    Rare Disease Day 2022 Part One #RareDisease #rarediseaseawareness #RareDiseaseDay #february28 #NORDRareDiseaseDay #eurodis #Disability

    “Alone we are rare. Together we are strong. ” This is the trademark for the National Organization for Rare Disorders, Inc. (NORD), US Sponsor of International Rare Disease Day. NORD is one of over 66 National Alliances (rare disease patient advocacy organizations) representing over 100 countries and regions all over the world, referred to as “Rare Disease Day Partners.” The month of February was designated “Rare Disease Awareness Month” by the European advocacy group “EURODIS” in 2008; that year, the first International Rare Disease Day was held on February 29. EURODIS acts as the central coordinator among the “Rare Disease Day Partners,” patients with rare diseases, and the global community at large to create unified messages and visual materials to raise awareness for rare diseases and the individuals who live with them. “Rare Disease Day” is a recognized day created to bring awareness and subsequent empowerment, community, and equity to over 300 million people worldwide fighting any of approximately 6,000 known rare diseases. This February marks the 15th “Rare Disease Awareness Month,” and February 28 will be the 15th annual “Rare Disease Day.” Ultimately, the objectives of Rare Disease Day are to ensure equal access to treatment and healthcare, to create more equitable social opportunities for those fighting rare diseases (higher education, jobs, etc.), and to simultaneously reduce stigmatization through social inclusion. Furthermore, through raising awareness, EURODIS and its Rare Disease Day Partners aim to find means to fund research for more effective and life-saving therapies as well as to minimize the time it takes to diagnose a person with any given rare disease. 
 
“Rare Disease Day” utilizes the narratives of “real life Rare Disease” “heroes” to identify common challenges faced by those with rare diseases to connect patients as well as their caregivers into a strengthened global community. For 2022, there are 16 “hero” community members from around the world who have agreed to share their stories with the world for the purposes of rare disease advocacy (rarediseadeday.org). Every Rare Disease Day bas a specific “Call to Action;” for 2022, the Call to Action has been named “Share Your Colours;” a means of representing individuals with rare diseases utilizing vibrant colors to express positivity, strength, and diversity of the individuals who make up the 300 million rare disease patients worldwide. By utilizing art and simple creative images, this “Rare Disease Day” will become accessible to many more people throughout the world.

    Please read Part Two!

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    Facebook live session on Rare Disease Day #RareDisease #rarediseaseawareness ##RareDiseaseDay2019

    Tomorrow at 12:00 noon I will be doing a Facebook live session for The Mighty for Rare Disease Day. It’s noon for the east coast and 9:00 am on the west coast. I hope everyone will tune in.❤️
    #TogetherWeAreStrong
    #PompeAwareness
    #RareDiseaseDay2019

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