Rare Disease Day
Connection is community, and being part of a community that understands some of the challenges you face, and also recognizes and celebrates your successes with you, is important.
On February 28, 2022, people and organizations participated in Rare Disease Day by attending seminars and showing their support by lighting up their homes or places of business with the colors green, pink and blue.
Here is a list of organizations that participated this year: https://www.rarediseaseday.org/friends
And here is the LAM Foundation’s info page on the Rare Disease Day website: https://www.rarediseaseday.org/friends/the-lam-foundation
COVID-19 has created a strain in our daily lives and can manifest in so many very different ways. Taking care of ourselves during this time also includes looking after our mental health. There is help available.
This is a very helpful website full of useful information and where I first found reliable information about LAM. Please share.
A wonderful resource and a strong social media presence. I follow them on Facebook to stay up to date.
This site has promise as LAM is a condition listed here, although I am conflicted about the possible commodification of health information to be sold to the highest bidder. Patient participation after diagnosis can be very empowering and I foresee more websites that will be set up with a social media type of platform to harvest patient data. See also Inspire and Disaboom (there are many others).
Read the small print (especially their privacy and user agreements) and then decide what is right for you and if you want to sign up 🙂 .
New CT Technology
Imaging technology is changing and improving which delivers benefits to doctors as well as patients (improved imaging=better diagnosis) . One such example is with Siemens’ new dual source CT Scanner, SOMATOM. Here is a link on the Siemen’s website to an interview with Dr. John Mathieson, Canada. And here is another link to the SOMATOM Force brochure which highlights the ability of this scanner to accommodate free breathing and ultra-low-dose levels of radiation for the patient.
This CT scanner is also being used in the United States of America.