Brent Perris – T1D Exchange

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- 1 year, 5 months ago
  
  Mary Ann Sayers has commented in the same post you commented in :
  Which of the following oral health issues have you experienced (diagnosed by a healthcare provider) since having T1D? Please select all that apply.
  I've been prone to abscesses in my gums, do you believe it! DDS was suprised that no root cause was apparent. I lost teeth because of it.
- 1 year, 5 months ago
  
  KarenM6 has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  The only active, letter-writing advocacy I have done is with a medical group who had a policy that I thought was unfair and not valid with current knowledge. My efforts were ignored, so I left the medical group.
- 1 year, 5 months ago
  
  Lawrence S. has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  I researched the House of Representatives vote on H.R. 6833: Affordable Insulin Now Act, March 31, 2022. One hundred ninety three (193) Republican reps voted against reducing the cost of insulin, including Florida representative John Rutherford. In case you wanted to know. Find your legislator's vote at: https://www.govtrack.us/congress/votes/117-2022/h102
- 1 year, 5 months ago
  
  Lawrence S. has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  Ahh Life, et al.: It should be noted that on August 8, 2022, Senators Marco Rubio and Rick Scott VOTED AGAINST the bill to cap the price of insulin at $35/month.
- 1 year, 5 months ago
  
  Lawrence S. has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  Thank you for your work.
- 1 year, 5 months ago
  
  Jim Cobbe has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  Not in person; I have signed internet petitions, sent emails, etc in the past, particularly with respect to costs of insulin and supplies and insurance coverage.
- 1 year, 5 months ago
  
  Patricia Maddix has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  I advocate for diabetes issues constantly by sending letters to my representative and senators as well as calling their offices. I have also met numerous times by phone and zoom with senators and representatives on these issues I work on advocacy for JDRF, and the national Federation of the blind. I am currently a member of a seven person task force advocating for simplification and accessibility for insulin pumps for the blind and visually impaired. We are making great progress and recently have been meeting regularly with all of the major pump companies this task force is a collaboration between the national Federation of the blind, American council of the blind, and Canadian national Institute for the blind. we are showing them that features they need to add to pumps to make them accessible for people who are visually impaired will also give sighted people many wonderful features that they will also find valuable. Such as the bolus feature that was recently added to the Tandem T connect app. diabetes is still the leading cause of blindness in the United States and other countries in working age adults and as the population ages there will be increased sight loss due to not only diabetes but age related eye conditions. We can use everyone’s help in spreading the word for the need to make insulin pumps accessible.
- 1 year, 5 months ago
  
  Joan McGinnis has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  I write regularly as I have T1D and am a retired Certified diabetes educator. they always answer with a form letter. Also have met with 1 US House representative at his office which was excellent and he was very responsive 0 this was arranged by the local JDRF office and anyone allowed to come - very few did but it was very informative and got to say anything I wanted. Met with my state representatives (picked the 3 closest districts to me) to discuss diabetes issues. All were interested and responsive and I offered tone a helper on anything related to diabetes. They asked good questions and were quite interested. I just called and made an appt to discuss with them my diabetes itinerary. They all agreed immediately. I keep in touch with their newsletters and write when appropriate.
- 1 year, 5 months ago
  
  Wanacure has commented in the same post you commented in :
  Which of the following oral health issues have you experienced (diagnosed by a healthcare provider) since having T1D? Please select all that apply.
  Anna, thanks. I agree. I’ve heard and read dental disease and heart problems are correlated. I also get yearly eye exams.
- 1 year, 5 months ago
  
  Wanacure has commented in the same post you commented in :
  Which of the following oral health issues have you experienced (diagnosed by a healthcare provider) since having T1D? Please select all that apply.
  I floss and brush at least 2x per day & now see dentist every six months for cleaning. Yes: dry mouth, a root canal, couple of crowns, receding gums.. Yes to bruxism, but could not get used to mouth guard. I’ll try it again. For dry mouth, I tried sugarless gum.
- 1 year, 5 months ago
  
  Wanacure has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  Thanks to all of you who have written or telephoned or testified. Your efforts have worked, but we must continue to lobby. I like Kristina’s economic arguments. :-) I’ve heard it’s best to keep letters and phone calls polite and short and limited to one specific point. Mention the specific senate or house bill you’re endorsing, if available. And of course “personalize your message.” Politicians are especially willing to listen to us in an election year. If you contribute a $5 check to a politician, make sure to note on the memo line, “To cure diabetes” or “Medicare for All” or “Thanks for lower insulin cost” et al.
- 1 year, 5 months ago
  
  Wanacure likes your comment at
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  I called my senator to explain how universal healthcare would make us diabetics lives so much easier. No response
- 1 year, 5 months ago
  
  kristina blake has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  I used to write guest editorials in the local newspapers during November. But never got published (I wish D month wasn't in competition with elections!) When I contact elected officals, I use an economic argument - that access to what we need to manage our T1D means that we can continue to work (and pay taxes), support our families, contribute to the local economies. I also delve into the fact (which should be of interest to federal officials) that access to what we need meams that we won't experience the devastating complications that would make it hard to have a job, would result in disabilities that would block a lot of employment, we would require public assistance to survive and by the time we arrive at Medicare elgibility we'd be a lot more expensive. I did finally see the results of one letter. In a campaign for governor a candidate held up a vial of insulin, stated that it costs just a few $ to manufacture and distribute but retails for hundred of $.
- 1 year, 5 months ago
  
  kristina blake has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  Awesome! How did things turn out. The hospital I have to use requires T1D patients to turn over their pumps, CGM's, and meters. They'll do maybe 5-6 fingersticks a day, and set a target bg of 200. Really lousy T1D management. Thanks for you efforts, I'd love to hear the story.
- 1 year, 5 months ago
  
  ConnieT1D62 has commented in the same post you commented in :
  Which of the following oral health issues have you experienced (diagnosed by a healthcare provider) since having T1D? Please select all that apply.
  Was dx'd with T1D at age 8. Had to have a set of molars pulled at age 12 to create alignment space for crooked teeth and then 4 years of braces to guide teeth into place. A couple of root canals as a young adult, veneers and crown work done as middle aged and older adult, and periods of receding gums over the years.
- 1 year, 5 months ago
  
  Jennifer Wilson has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  I have signed up to participate multiple times but have never been contacted.
- 1 year, 5 months ago
  
  Ahh Life has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  Lawrence S -- Yes. And to add insult to injury to ignorance, the Honorable Rick Scott now only was oblivious to my suggestion, for the next seventeen months I got nothing, NOTHING, but requests for money. Is it any wonder that politicians are labeled unresponsive? I though unresponsive was for cadavers?!?
- 1 year, 6 months ago
  
  Brian Vodehnal has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  Checked a box on a robo email and got a form letter back from a state senator. To which I replied and asked why private insurance is being discriminated against on the latest pharmaceutical bill they are so proud of...received another robo email from her in the vain of vote for me....lost faith and interest.
- 1 year, 6 months ago
  
  Lorri McLuckie has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  Thank you for all your hard work!
- 1 year, 6 months ago
  
  Janice Bohn has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  I was in a commercial advocating for healthcare. I have written confess people and had a letter I wrote read on the senate floor. I also sign petitions and add my story when asked
- 1 year, 6 months ago
  
  Ahh Life has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  Demonstrably no shortage of knuckleheads and flapdoodles, perhaps to be doomed to the dustbin of history. But good work is always appreciated. 😇
- 1 year, 6 months ago
  
  Kim Davis has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  Mostly calling or writing senators when a problem existed. They always send a letter thanking me for addressing this different issues!
- 1 year, 6 months ago
  
  Henry Renn has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  I lodged complaint & advocated with local hospital to change their protocul for hospitalized Type 1s using a pump.
- 1 year, 6 months ago
  
  Kristine Warmecke has commented in the same post you commented in :
  Have you participated in a diabetes-related advocacy effort (I.e., calling your elected officials, meeting with representatives, etc.)?  If you have, share your experience in the comments.
  No, I've not done any in person advocacy, only letter writing.
- 1 year, 6 months ago
  
  Ms Cris has commented in the same post you commented in :
  Which of the following oral health issues have you experienced (diagnosed by a healthcare provider) since having T1D? Please select all that apply.
  Anna, I have Rosacea, combo of types 1 and 2, since my teens (but I'm Portuguese). They now know it's autoimmune, and those with rosacea are 3X more likely to develop T1D. Look into Sjogrens, especially if you have joint pain, with an ANA and then SSa and SSb blood tests. Get a tear test at the opthalmologist. Those are easiest tests as indicators for SS or UCTD. Good luck!
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Brent Perris

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