Your health and well-being are our highest priority. Many of you already felt isolated by FSHD, and now with COVID-19 it is even harder to get out, or for others to visit. The fragile webs of support you’ve built to help you get by are being shredded. We started "Sequester Camp" to help reinforce the bonds of community. This is a time to reach out, connect. Seek assistance if you need it. Offer to help others, because you have a lifetime or experience and have figured out how to navigate difficult circumstances. Together, we will get through this turbulent time.
Join the #IStayHomeFor Campaign
Urge people to self-isolate to protect our loved ones and front-line healthcare workers and service providers. Join the #IStayHomeFor campaign on social media by sharing a photo of yourself holding this #ISTAYHOMEFOR sign. Download, print, and add the names of those you are protecting.
Weekly camp activities
- NEW! Monday, 3:00-3:30 PM ET - Fitness workout webinars with Bill Herzberg and his trainer Mitch Wade (firstname.lastname@example.org; on Instagram @mitchwadepdx). They were so impressed by the progress Bill has made in addressing his FSHD muscle weakness by working out with Mitch that they want to share some of their methods with you. Every Monday through June 2 (except on Memorial Day). Register here.
- Wednesday, 2:00-2:30 PM ET - Story time with Belinda Miller. Award-winning author Belinda Miller will read every week from the first volume of her Phillip's Quest series, Winterfrost. Register here.
- Wednesday, 9:00-10:00 PM ET | 8:00-9:00 PM CT. This week FSHD Radio returns to its monthly show time as Tim interviews Lynn Stevens on finding employment and switching careers when you have a disability. On Facebook Live. Or dial in to talk: (414) 375-2561.
- Thursday, 1:00-2:00 pm ET, our weekly Sequester Camp webinar. We’ll be sharing information, resources, and social support. Click below to register.
Telemedicine for FSHD is now available from many Clinical Trial Research Network sites. We've listed their appointment contact information on this post.
Reliable sources of information
The World Health Organization's Q&A on coronaviruses
This Johns Hopkins site tracks global COVID-19 statistics.
CovidActNow provides state-by-state models of project numbers of cases.
Additional news updates of interest:
- Early peek at data on Gilead coronavirus drug suggests patients are responding to treatment. A preliminary report from a clinical trial site at the University of Chicago shows promising results. "In scientific terms, all the data are anecdotal until the full trial reads out, meaning that they should not be used to draw final conclusions."
- Obesity Linked to Severe Coronavirus Disease, Especially for Younger Patients. "Though people with obesity frequently have other medical problems, the new studies point to the condition in and of itself as the most significant risk factor, after only older age, for being hospitalized with Covid-19, the illness caused by the coronavirus. Young adults with obesity appear to be at particular risk, studies show. The research is preliminary, and not peer reviewed, but it buttresses anecdotal reports from doctors who say they have been struck by how many seriously ill younger patients of theirs with obesity are otherwise healthy."
- Update on hydroxychloroquine: Fact-check by the New York Times. Test-tube findings often do not work in patients. The initial small study in France did not meet peer-review standards. Studies in China were uncontrolled or not blinded. A nationwide trial began on April 2 in the United States; it is to enroll 510 patients at 44 medical centers. Like every drug, it can have side effects. It is not safe for people who have abnormalities in their heart rhythms, eye problems involving the retina, or liver or kidney disease.
- The evidence for everyone wearing masks, explained. There is some evidence that the public should wear masks. But let doctors and nurses get them first. This Vox article does an excellent job of explaining a topic that has been reported in a confusing way.
- The Coronavirus Patients Betrayed by Their Own Immune Systems. This hypothesis suggests that drugs used to tamp down immune response (including treatments for autoimmune disease) are candidates for covid-19 treatment. Again, don’t self-medicate! These are potent drugs with potentially dangerous side-effects.
- Malaria Drug Helps Virus Patients Improve, in Small Study. Caveats: the study was in mildly affected patients and was not peer-reviewed. People should not be self-medicating! Drugs should be taken only under medical supervision. Stockpiling is already leading to shortages for people who need to medication to treat their medical conditions.
- Wuhan Data Link COVID-19 With Damage to Heart Muscles. In this case series study of 187 patients with COVID-19, 27.8% of patients had myocardial injury, which resulted in cardiac dysfunction and arrhythmias. Myocardial injury has a significant association with fatal outcome of COVID-19, while the prognosis of patients with underlying CVD but without myocardial injury were relatively favorable. (JAMA)
- No drug has yet been shown in a randomized clinical trial to be effective in treating covid-19. Several drugs that are on the market for other indications are currently in trials. Do not self-medicate as these drugs can have serious side-effects. Consult your doctor. (CDC website).
- A Phoenix-area man is dead and his wife is under critical care after the two took chloroquine phosphate in an apparent attempt to self-medicate for the novel coronavirus, according to hospital system Banner Health. It does not appear they took the pharmaceutical version of the drug, but rather "an additive commonly used at aquariums to clean fish tanks," Banner Health said in a statement. (CNN).
- Experts say there’s no clear evidence that ibuprofen makes COVID-19 worse. (Healthline).
- A report in the American Journal of Gastroenterology says around half of covid-19 cases in China presented with GI symptoms (diarrhea). So if you have GI symptoms along with other symptoms (dry cough, impaired breathing, fever), don't rule out covid-19.
- Lost Sense of Smell May Be Peculiar Clue to Coronavirus Infection. But evidence is preliminary. (NY Times).
- SCAM WARNING: Scammers are targeting people with emails and telemarketing calls offering #coronavirus tests, masks and other items in exchange for Medicare numbers. DON'T FALL FOR IT! (WBZ News).
Sequester Survival Kit
- Wash your hands! Don't touch your face! Social Distancing!
- Health information about COVID-19 and FSHD.
- Medic Alert card. Download and print this card out, keep it handy and make sure your family or caregiver know where it is. Give it to emergency technicians and care providers if you develop symptoms and need to go to the emergency room. Put your name and contact info on your Bi-Pap or ventilator so that if you bring it with you to the hospital, it won't get misplaced or lost!
- Read and watch this NPR program: No, You Don't Need To Disinfect Your Groceries. But Here's How To Shop Safely.
- Virtual chapter meetings, open to all! Check the Events Calendar.
- Weekly FSHD Radio call-in show on Facebook Live, starting Wednesday March 25 at 9PM ET | 8PM CT | 7PM MT | 6PM PT.
- Connect with your neighbors via https://nextdoor.com/.
- Please contact us if we can be of assistance!
Information provided by the FSHD Society does not imply an endorsement of any of the drugs, procedures, treatments, or products discussed. Please consult your own healthcare provider about any medical interventions.