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Share Your Story for Rare Disease Day 2023!
As a member of the rare disease community, Bionews (this site’s parent company) invites you to join our Rare Disease Day 2023 campaign. Throughout the month of February, we will be featuring on Bionews social media accounts our community’s responses to the question “Why does rare disease awareness matter to you?” Participants can include anyone affected by a rare disease.
Your submission could be featured on our Bionews corporate LinkedIn, Facebook, and Instagram pages. If your submission is specific to one of the rare diseases Bionews covers on social media, your post may be featured on that social media page (Facebook or Instagram).
To participate, please email your response to [email protected], along with two pictures of yourself, and your social media accounts if you have them. Please request a release form for you to sign.
Instructions and specifications are as follows:
- 150-200 words answering the question “Why does rare disease awareness matter to you.” Please try to adhere to the word count as responses longer than 200 words may not be accepted.
- Please submit responses in a Microsoft Word attachment in your email.
- The subject of the email should be as follows: Full name – RD Awareness 2023 – the name of rare disease and your connection to it (patient, caregiver, etc.).
- Attach at least two high-quality pictures of yourself/capturing your “why” in PNG, JPEG, or JPG format. If anybody besides yourself appears in your pictures, please notate their names so we can add them to the post.
- In the text of the email, include your full name, rare disease community, Instagram handle, Facebook URL, or Linkedin URL so we can tag you if your submission is selected during the month of February.
Thank you for your willingness to help us raise awareness during the month of February!
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2 Replies
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In the quaint town of Eldenwood, nestled among rolling hills and ancient forests, lived a young girl named Elara. She possessed a rare and mysterious condition known as “Aeris Veil,” a disease that caused her lungs to be unusually sensitive to the slightest changes in air quality. Her life was a delicate dance between fragility and strength.
From a young age, Elara learned to embrace life’s beauty in the simplest of moments. She would sit by her bedroom window, gazing at the shifting patterns of sunlight filtering through leaves, imagining those shimmering rays as the whispered wings of guardian spirits. Her parents, Lily and Owen, supported her with unwavering love, teaching her that her unique perspective was a gift, not a burden.
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Acquired this diseases after a doctors visit for an ear infection, then doctor asked if I want a booster vaccine shot of pertussis Called DTAP. next day my muscles went weak, double vision , droopy eye , can’t walk straight . Went to ER and several tests , 2 days later Neurologist diagnosed it as MG . Never got vaccinated again not even a flu shot .no flu ever for 11 years . Taking vitamin D3.B12, mestinon 2times a day . 2 yrs ago I had a booster iVG drip the 2nd time in 10 years. I get tired easily and perspire a lot when when I’m doing chores but so far God is good with me .last year I survived cOvid so they say at the hospital , nobody got the virus in my household including visiting daughters Or my husband who sleeps in the same bed with me. It’s pneumonia due to a long lingering colds and coughing . Never lost my sense of smell or taste .Mestinon is better than prednisone .mestinon had no steroid unlike the prednisone which gives you a moon face and were gain. All best of health to my fellow mg survivors.God bless🙏
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