February 11, 2020 at 11:02 am #22998
BioNews is wanting to recognize rare diseases this month and EVERY month. This month especially is important to recognize rare diseases because it is the month for rare disease day. We are using and encouraging others to use the hashtag #whatmakesmerareph to have conversations about what makes someone rare with PH. This could either be a quality about yourself, something in your daily life that makes you stand out, a treatment , etc. Just be sure to upload a picture or a short video with that tag !
I created a video on my Facebook page that received good feedback and I also uploaded it to my Instagram stories. In the video I said, “hey I’m Brittany Foster and I am rare because …” I then talked about the chromosome defect I was born with that caused many of the conditions that I have. I was goofy when talking about my oxygen and my “handy dandy ventilator” and even did a little try on for the fans of the vent machine !
What are your ideas for spreading awareness and using the tag #whatmakesmerareph ? Spread the word!
February 11, 2020 at 1:39 pm #23011
Brittany, I thought you did a nice job with that video. I shared it to my wall. Thanks for doing that. I hope more people will create some too.
February 12, 2020 at 9:54 am #23021
Thank you @colleensteele and if more people want to do a video it would be pretty simple on the “script”. You could start off by stating your name, where you’re from, what condition or conditions you have, what you think makes you rare with living with this condition, or you can even talk about something that has been POSITIVE about living with a chronic and rare illness. Spread the word!
February 13, 2020 at 5:05 pm #23050Jimi McintoshParticipant
Thank you for sharing your story with the world. You are helping to make us visible and to give all of us some air-time. I have shared the story of PH, with anyone that expresses an interest. Thought about a Facebook page for those who wonder what a handicap person looks like. Thank you Brittany for sharing your journey, you are still my “HERO”
To ease some of our members minds, please read the following article. Anyone interested in making it an election year platform?
PHA Opposes Increased Eligibility Review for Disability Assistance
The Social Security Administration (SSA) proposed changing the social security disability insurance (SSDI) process to make its eligibility review more frequent. PHA opposes the change and wrote to SSA in January to recommend that people with pulmonary hypertension (PH) undergo eligibility review less often.
Currently, SSA reviews SSDI eligibility every year, every three years or every five to seven years. The frequency depends on how likely SSA thinks someone will improve and return to work. Typically, SSA places people with PH in the three- or seven-year review categories, depending on the severity of their disease, whether they have other health conditions, what treatments they take and other factors.
SSA proposes to add a new two-year review category and condense the current five- to seven-year category to six years. The proposal was unclear about which health conditions would move to the new two-year category.
PHA knows that many people with PH continue to face major health challenges even after beginning therapy. In addition to PH symptoms, PH patients may face significant medication side effects and the burden of managing therapies that are complex to administer. PHA also heard from our members who receive SSDI that the review process itself can be burdensome. Even when the paperwork isn’t difficult, some patients reported dramatic increases in anxiety during the months that they waited to see whether they still would be eligible for assistance.
PHA shared these perspectives in formal comments to the Social Security Administration, strongly opposing any change that would lead SSDI recipients with PH to face more frequent eligibility review. In addition to PHA, more than 120,000 organizations and individuals submitted comments on the proposed change. SSA will review all comments before issuing a final decision about its proposal.
February 14, 2020 at 10:15 am #23056
@jimi Thank you for sharing that information from PHA with us. I know that it is something that is a worry to others that are on disability and it shouldn’t be something that we have to worry about on top of everything else. Extending this and not having as many reviews would take some of the stress off of having to feel like we have to “prove” how sick we are. It just isn’t right.
February 14, 2020 at 2:22 pm #23067
February 16, 2020 at 3:59 pm #23080Vanessa VaileParticipant
Jimi, I know they’re easy enough for reader to find for themselves but including links to PHA article and SSA page for formal comments would make it easier to comment, which mean more people would visit page and leave comments.
It’s been a bad week, but I’ve been following Forum conversation via email notices and thinking about how to support Rare Disease Day. IMO it’s important to coordinate campaigns and collaborate with other rare disease groups so we can make our voices louder. NORD estimates 25-30 million in the US (almost 1 in 10) and 300 million worldwide have rare diseases. Speaking out in unison, that would be a big voice, loud enough to be heard by even the deafest pol or policy gatekeeper. It’s just not about awareness either but also taking action. fwiw cutbacks and changes are on the table for Medicare and Medicaid too.
Let’s find out who else in larger rare disease community is pushing back and join them. I remember seeing a call to action from CCDC (Colorado Cross Disability Coalition) on this issue and will look for it.
February 17, 2020 at 10:40 am #23082
@vanessavaile I love and appreciate all of your enthusiasm for this topic ! I think it is so IMPORTANT to reach out to other communities especially because we are stronger TOGETHER. I find that sometimes the disease communities can get in competition with on another almost about ” who has it worse” there is some of that in all the disease communities that I am a part of and when I see that I try my hardest to point this out in conversations especially because everyone’s version of “bad” and “worse” looks different. Support is what is mutual in all of that.
February 18, 2020 at 12:29 pm #23115Vanessa VaileParticipant
Thank you @brittany-foster. I’m trying to build that into my advocacy as much as possible and then connect to the #whatmakesmerareph hashtag, imo less in need of decoding for average and less aware readers to understand.
In my previously primary and very different advocacy area, this is all too common — and I suspect true of most.
February 21, 2020 at 10:21 am #23125Kaye NorlinParticipant
A few days after I crashed in 2016. Question of the day: who is going to feed me?
February 21, 2020 at 2:03 pm #23176
February 25, 2020 at 10:41 am #23202Rebecca TalkieParticipant
I have a question. I am new to the hashtag stuff. If I use the hashtag and then write a paragraph about what makes me rare on Facebook, will that help in anyway? I couldn’t even begin to know about how to attach a picture much less a video. I would need one of my son in laws for that. @kaye-norlin those pictures just blew me away. I was a cardic nurse and I have seen people with all those lines in ICU. You are a survivor!
February 25, 2020 at 1:43 pm #23213
@becca Hey Rebecca. yes, if you use this hashtag it will go into a “feed” so when you click on the tag you will see others that have posted with their stories. Any lit bit of awareness will help and that is what our goal would be here. Whether it is a story about something you want to share, a picture, video, or just your words it is still valuable! Thank you so much!
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