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Launch of Lupus & Company

TeleSupprtGroupNov

With you in mind Puzzled Butterfly created this Teleconference so you can attend a support group no matter where you are or any symptoms you’re experiencing.

Meeting and talking with others who understand can boost your emotional and physical well-being. This group can provide you with …

• Coping skills
• Motivation
• Information
• Caring connections
• Hope

The Lupus & Company Tele-Support Group is a free, call-in support group. Whether you’re a patient, caregiver, family member or friend – join our group and meet other people living with or affected by lupus and the “company” it brings. Learn and share with others in a warm, friendly and understanding atmosphere.

Join us every 2nd Tuesday of the month from 6:00 p.m. to 7:30 p.m. All you have to do is dial the call-in number and when prompted enter the access code.

For more information regarding Puzzled Butterfly’s upcoming events, services and programs, please visit puzzledbutterfly.com or email info@puzzledbutterfly.com.

 

Be Encouraged…Be Blessed…Be Enriched…Be Authentically You!

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Take Action!

Congressional Lupus Caucus

Take Action Urge your Representative to KNOW Lupus

The Lupus Foundation of America recently hosted a briefing on Capitol Hill urging Congressional staff to KNOW LUPUS. Contact your Representative today and encourage them to join the Congressional Lupus Caucus.  The Caucus was founded with the primary purpose of ensuring all members of Congress are armed with the understanding of the impact of lupus and actively support advancement of lupus research and increased awareness of the disease among the public and health professionals.

Research shows that nearly two-thirds of the public knows little or nothing about lupus beyond the name.  And despite the widespread prevalence of lupus, medical research has remained underfunded relative to its scope and devastation.

Please take a moment to email to your Representative TODAY urging them to join the Congressional Lupus Caucus and KNOW LUPUS in order to create a future with NO LUPUS.  You can visit the Caucus web site to learn more.

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Take Action

Help Ensure Access to Affordable Medications

Urge your Representative to Support the Patients’ Access to Treatments Act of 2015

The future of lupus drug development is strong, and the Lupus Foundation of America is a leader in advocating for legislation to ensure that once new treatments for lupus are available, people with lupus have meaningful access to these vital treatments without experiencing burdensome out-of-pocket costs.

Now is the time to take action!  Representatives David McKinley (R-WV) and Lois Capps (D-CA) have introduced the Patients’ Access to Treatments Act (H.R. 1600), a bill that would limit cost-sharing requirements for treatments placed on a specialty tier and charged a co-insurance (a percentage the cost of a drug).

The bill had 142 bi-partisan co-sponsors last year, and we need your help getting original cosponsors before the legislation is reintroduced!  Write your Representative today urging them to co-sponsor the Patients’ Access to Treatments Act.  This important legislation will help reduce the financial burden on people who rely on highly specialized medications for maintaining and improving their health.  Take action today

Loop Us

Lupus Support Group 5-9-15

As I told the story of my journey with Lupus, I discovered I was telling parts of so many others stories. For those that are afraid of telling their story, they find themselves looped into ours. No matter how different we are, Lupus has looped us together. Keep telling Our stories!

Be Encouraged…Be Blessed…Be Enriched…Be Authentically You!

May…Lupus Awareness Month

 

Someone You Know Has Lupus…Me!

What is lupus?

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years.

In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).

These are some additional facts about lupus that you should know:

  • Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
  • Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
  • Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
  • Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
  • More than 16,000 new cases of lupus are reported annually across the country.
  • It is believed that 5 million people throughout the world have a form of lupus.
  • Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too. Most people will develop lupus between the ages of 15-44.
  • Women of color are two to three times more likely to develop lupus than Caucasians.
  • People of all races and ethnic groups can develop lupus.

http://www.lupus.org