I’m Walking to End Lupus. Please support me.
I can't believe that the 2020 Walk to End Lupus Now is less than two weeks away! Sunday, October 10th will mark my 10th year walking to end lupus. Please help me beat my goal of raising $2,000 using the link below to make your contribution.
The walk this year will be virtual. Please let me know if you can join us even if it is for a short period. It would be great to see you.
Lupus is very personal to me. As many of you know, Pam, my wife, has lupus. She has been dealing with lupus since her teenage years. Pam's diagnosis took seven years. She has had her ups and downs battling lupus. Her courage inspires me.
Saying that 2020 has been a difficult year would be an understatement. But what it has done for me is to highlight the importance of family and community, working together to stay healthy and safe, and being proactive in making adjustments to stay ahead of whatever the pandemic may bring.
As part of our mission this year, Pam and I have been active in making people aware that lupus patients are high risk individuals. In managing their lupus, many patients take immunosuppresants, which puts them at greater risk of the coronavirus.
There was an issue earlier this year when there was a sudden shortgage of hydroxychloroquine, a drug used to treat malaria that is also regularly taken by lupus patients, when there were claims that it could be used to treat COVID-19. Many patients including those in our Lupus family were unable to obtain the medication. It was a harrowing period. With no cure currently, the best a lupus patient can do is to be vigilent about doing what they can to prevent flares and using medications to manage symptoms. With the advocacy efforts by the Lupus Foundation of America, healthcare providers, and the voices of lupus patients, patients eventually were able to secure medications needed for their continued treatment.
Pam and I hoped that 2020 would be the year that we stepped up our advocacy efforts. Our plans to be in Washington, DC in March to meet with members of Congress about lupus were thrawted by COVID-19. Once again, the Lupus Foundation of America made the necessary adjustments in switching to a digital format so our voice could be heard. Although it would have been good to meet with the office of Senators Kamala Harris and Diane Feinstein in person, we had good virtual meetings with their staff.
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure. Use this link for more information in English, Spanish, or Chinese - https://www.lupus.org/resources/understanding-lupus-guide
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk. African Americans, Hispanic/Latinas, and Asians are among the most affected groups.
- The Lupus Foundation of America has a questionnaire to help people see if symptoms are related to lupus - https://www.lupus.org/could-it-be-lupus
Together, we can solve the cruel mystery of lupus. Thank you for your generosity! Feel free to share this email and help me spread the word.