Posted in Awareness, Women

2020 marks the 100th anniversary of the passage of the 19th Amendment, guaranteeing and protecting women’s constitutional right to vote.

The year 2020 marks the 100th anniversary of the passage of the 19th Amendment, guaranteeing and protecting women’s constitutional right to vote.

This historic centennial offers an unparalleled opportunity to commemorate a milestone of democracy and to explore its relevance to the issues of equal rights today.

The Women’s Vote Centennial Initiative, a collaboration of women-centered institutions, organizations, and scholars from across the US, works to ensure that this anniversary, and the 72-year fight to achieve it, are commemorated and celebrated throughout the United States.

From 2019-2020, the US will celebrate the 100th anniversary of the 19th Amendment and women’s constitutional right to vote.

Suffragists began their organized fight for women’s equality in 1848 when they demanded the right to vote during the first women’s rights convention in Seneca Falls, New York. For the next 72 years, women leaders lobbied, marched, picketed, and protested for the right to the ballot.

The U.S. House of Representatives finally approved the Susan B. Anthony Amendment, which guaranteed women the right to vote, on May 21, 1919. The U.S. Senate followed two weeks later, and the 19th Amendment went to the states, where it had to be ratified by 3/4ths of the-then-48 states to be added to the Constitution. By a vote of 50-47,

Tennessee became the last state needed to ratify the 19th Amendment on August 18, 1920. Secretary of State Bainbridge Colby issued a proclamation declaring the 19th Amendment ratified and part of the US Constitution on August 26, 1920, forever protecting American women’s right to vote.

Today, more than 68 million women vote in elections because of the courageous suffragists who never gave up the fight for equality. Explore the resources below to learn more about the story of the 19th Amendment and women’s fight for the ballot.

The Suff Buffs- Learn More About Great Women


Posted in Awareness

Isolation Is Normal For Many Disabled

All around the world, governments placed their citizens into various forms of lock-down as the COVID19 virus spread fast throughout the world.

Suddenly, and for the first time in a very long time, huge populations are coming face to face with a feeling of what its like being excluded from normal life and a sense of isolation, as individuals with the virus, and those in their households, are quarantined in homes and hospitals.

Many asked to remain home unless its essential to out, many workers are now laid off. This is devastating and at times depressing for so many, but what many don’t realize is this sense of isolation and detachment from “normal” life isn’t a temporary phase for many disabled.

They aren’t waiting out the lockdown for normality to resume. For a large percentage of the population, including the elderly and many of the 1.3 billion people living with a disability from child to adult worldwide, this daily experience of isolation and exclusion is unfortunately the norm.

Many of those living with a disability will not be able to go back to “business as usual” after the pandemic has cleared:

This is their usual. But their usual must change with this pandemic, because for far too long, people living with a disability have been excluded from daily life.

If suddenly many can work from home why cannot the disabled? Many companies snarled at employees working from home often leaving those immune compromised or the disabled just out of luck when wanting to remain in the workforce.

And right now, amid this pandemic, we must not forget the specific needs of people with disabilities. In 2020, it is deeply worrying that, once again, in a time of crisis, I see many cases where the specific needs of the disability community are being overlooked. As we design systems for the future, it is important we do not repeat the wrongs of the past – or the present crisis.

Example : Many disabled use at home delivery grocery services regulary- once this pandemic started suddenly disabled could not rely on logging in to get groceries in a couple days: sometimes all the slots were taken for up to 2 weeks.

Noone made any special accommodations for them or seen that their needs were met.

Same with the extra unemployment check stimulus many received not just their standard unemployment you not just got unemployment you they received an extra 600.00 a week or every two weeks: Yet the disabled who get a mear 450.00 to 1300.00 a month received nothing else weekly or monthly. Many said they made more on unemployment than working because of that extra kick . Yet again the disabled are left out.

Thankfully, everyone did receive the 1200.00 stimulus as a one time help which was appreciated.


But the disabled still in the long run got screwed, often they seem to be overlooked, the government could have put an extra 600.00 a month or more in their account like they did those who were unemployed getting it a week.

I noticed there were no sales, so everything cost more except gas for the car. Food prices were up, and good luck finding many needed household items.

Right now, we must not forget the specific needs of people with disabilities. In 2020, it is deeply worrying that, once again, in a time of crisis, I see many cases where the specific needs of the disability community are being overlooked.

As we design systems for the future, it is important we do not repeat the wrongs of the past – or the present crisis.

There is a business incentive to recognize the value of the market of those living with a disability, but there is an even stronger moral and societal imperative that this exclusion ends now.

The majority of people have now experienced what mass social exclusion feels like, and we cannot “unknow” what we know about how it feels to be isolated.

We now all know the pain of isolation and exclusion , unable to see family, friends, coworkers, classmates as we plan for our future, we must insist on no one being left behind.




Posted in Awareness

Everyone Can Get Covid19 A Must Read for RA and Lupus Patients or anyone taking Plaquenil

I am not picking in our POTUS because whether you like him or dislike him he has a really tough job, that being said we must know the facts about Plaquenil and stop some of guessing games. I don’t know if he was given misinformation but from what I have read there is not evidence that this study even exists. see below for full information

You may have seen recent headlines suggesting that people with lupus, an autoimmune disease that affects about 1.5 million Americans, don’t contract coronavirus because many of them take hydroxychloroquine.

This information is not true, and the Global Healthy Living Foundation needs to set the record straight based on data and medical expertise.

Hydroxychloroquine — a first-line lupus therapy that is also commonly used to treat rheumatoid arthritis and other rheumatologic conditions — is currently being studied as a potential treatment for COVID-19 because of its anti-viral properties. But there is no conclusive evidence of its benefits for covid19 yet.

During a White House briefing Saturday April 4, President Trump suggested there was possibly some research showing that lupus patients did not get coronavirus. The implication was that perhaps taking hydroxychloroquine was protecting them. Maybe I misunderstood what was being said.

And as I said I will not pick on the POTUS because he really has a tough job , now more than ever.

“They should look at the lupus thing. I don’t know what it says, but there’s a rumor out there that because it takes care of lupus very effectively as I understand it, and it’s a, you know, a drug that’s used for lupus,” President Trump said during the briefing. “So there’s a study out there that says people that have lupus haven’t been catching this virus. Maybe it’s true, maybe it’s not.”

It is not true.

Emerging Data on Lupus Patients and COVID-19

A couple of weeks ago, as the coronavirus pandemic was massively increasing in scale and impact, rheumatology researchers from around the globe started collaborating to collect data on patients with such conditions as lupus to answer questions exactly like this. Do patients with autoimmune conditions fare differently from COVID-19 than the general population? Do certain medications lead to better or worse outcomes?

The registry is called the COVID-19 Global Rheumatology Alliance. (The Global Healthy Living Foundation and its arthritis patient community CreakyJoints was one of its first members and advisers.) More data is being collected daily and certainly it is too early to make any definitive conclusions about COVID-19 in rheumatology patients, but the data so far show that:

  1. Lupus patients do, in fact, get COVID-19.
  2. Many of them are taking hydroxychloroquine at the time of their diagnosis.

According to information from the registry shared over the last few days on Twitter, the registry now has data on 110 patients. Most patients have rheumatoid arthritis (36 percent), followed by psoriatic arthritis and lupus (17 percent each).

On April 2 — two days before the President’s recent statements about lupus and hydroxychloroquine — the registry Tweeted: “One frequently asked question: Over 25% of patients who developed a COVID-19 were on HCQ [hydroxychloroquine] at the time of diagnosis.”

Last night, the registry tweeted: “Based on early data currently available in our registry, we are not able to report any evidence of a protective effect from hydroxychloroquine against COVID-19. A randomized, controlled trial would be the only way to study this to get a reliable answer to this question.”

Rheumatologists who treat patients with lupus are concerned about rumors suggesting patients are less susceptible to COVID-19.

Misinformation like this puts patients at risk, says rheumatologist Grace C. Wright, MD, PhD, founder and president of the Association of Women in Rheumatology (AWIR). “There is no data that hydroxychloroquine is protective against contracting COVID-19.” She, and many other rheumatologists the Global Healthy Living Foundation has spoken with over the last several days and weeks, worry that it could be a serious issue if people who take hydroxychloroquine mistakenly think they are protected from infection.

Rheumatologist Robin K. Dore, MD, clinical professor of medicine at the David Geffen School of Medicine at UCLA, shared this message on her patient portal:

To Dr. Dore’s patients who are taking Plaquenil (hydroxychloroquine), there is no evidence that this medication prevents one from developing a COVID-19 infection. This medication is now being studied to determine if it lessens the severity of the infection once a person has developed the disease. Dr. Dore urges you to continue social distancing, hand washing, and wearing a face covering when you are out in the public. Do not feel that you are immune to the virus if you are taking Plaquenil. Further updates will follow as appropriate.

Concerns About Access to Hydroxychloroquine

Other parts of the White House briefing continued to exacerbate fears among lupus and other rheumatology patients about having access to hydroxychloroquine, which has been in short supply due to its current use as an experimental COVID-19 therapy.

President Trump urged Americans to take the medication: “What do you have to lose? Take it. I really think they should take it. But it’s their choice. And it’s their doctor’s choice or the doctors in the hospital. But hydroxychloroquine. Try it, if you’d like.”

Messages like these could further impact the availability of this crucial medication for people who take it every day to prevent complications from lupus and other conditions.

We have written before about how denying hydroxychloroquine prescriptions to rheumatology patients, which is occurring in the Kaiser Permanente health care system in California right now, for example, is dangerous and even life-threatening. We have also explained how hydroxychloroquine is used to treat lupus and other rheumatologic conditions. To reiterate some of those key points:

“If a patient has to stop taking hydroxychloroquine, they are more likely to experience a flare,” says Ashira Blazer, MD, a rheumatologist at NYU Langone Health in New York City whose clinical research focuses on lupus. “And the last thing we want is for patients not to be able to take a drug that is helping them, then flare, then require heavier immunosuppressing drugs, then be more immunocompromised, and then contract COVID-19.”

“Hydroxychloroquine is a safe, effective, and inexpensive therapy for conditions like lupus and rheumatoid arthritis,” says Dr. Blazer. “If there is a big shortage, it will exacerbate health disparities. People who need an effective and affordable drug won’t be able to get it. There is a risk of mortality, especially for minority women who are disproportionately affected by serious lupus complications, if hydroxychloroquine is not made available to our most vulnerable patients.”

Experiencing Issues Accessing Hydroxychloroquine? Tell Us

If you are a patient living with a chronic illness and are having trouble getting access to hydroxychloroquine (Plaquenil), we want to hear from you. Click here to share your story with us.

Get Free Coronavirus Support for Chronic Illness Patients

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