MCS Housing Challenges

Greetings from Colorado! My name is Janet Stone and I developed chemical sensitivities at the age of 15 when my family's home was treated for termites and the pressurized solution accidentally got pumped into our living space. My life changed overnight and I have had constant health issues since then.

One of the greatest challenges was finding safe housing. I decided if I could ever catch a break and get well enough to go back to college, I was going to become an epidemiologist and advocate for people with MCS/TILT. As the decades went by that seemed less and less likely until I finally found successful treatment for my Mast Cell Activation Syndrome. It gave me enough stability that I could commit to school (at the age of 65) and for the last five years that's what I have been doing...first a bachelor's in biomedical science from the University of Wisconsin, and now a master's in public health from Eastern Washington University.

I would love for you to take this survey and help us collect the data we need for policy advocacy and provider education. It will be the basis for a journal paper in addition to my thesis presentation. No identifiable information is collected.

Here is the link. Please feel free to share:

https://www.surveymonkey.com/r/housingmcs

Don't give up on your dreams!


Survey: Housing Challenges for People with MCS or TILT
Greetings from Colorado! My name is Janet Stone and I developed chemical sensitivities at the age of 15 when my family's home was treated for termites and the pressurized solution accidentally got pumped into our living space. My life changed overnight and I have had constant health issues since then. One of the greatest challenges was finding safe housing. I decided if I could ever catch a break and get well enough to go back to college, I was going to become an epidemiologist and advocate for people with MCS/TILT. As the decades went by that seemed less and less likely until I finally found successful treatment for my Mast Cell Activation Syndrome. It gave me enough stability that I could commit to school (at the age of 65) and for the last five years that's what I have been doing...first a bachelor's in biomedical science from the University of Wisconsin, and now a master's in public health from Eastern Washington University. I would love for you to take this survey and help us collect the data we need for policy advocacy and provider education. It will be the basis for a journal paper in addition to my thesis presentation. No identifiable information is collected. Here is the link. Please feel free to share: https://www.surveymonkey.com/r/housingmcs Don't give up on your dreams!

Here are some more details: Title: Housing Challenges for People with MCS or TILT Number of questions: 26 Time to complete: Average 8 minutes Who can take the survey? Anyone 18 and older who either self-identifies as having MCS or has been diagnosed with MCS What personal information is collected? None. It's completely anonymous and I have no way of knowing who you are, your internet provider, or what country you are in (although you can share that in one of the questions). What is it for? This is my master's thesis project that will be analyzed and shared in an oral presentation and written paper for my faculty supervisors. The data may be further used to write a paper for a professional journal to highlight the need for safe housing or to present to lawmakers for policy development. Can I skip questions? Yes, you can skip any questions you are not comfortable answering. Will I get to see the results? Yes, I will share results in the fall after my project is concluded. Can I share the link? Yes, you can cut and paste the link from the post or you can go to the introduction page and copy and paste the link from the address bar. How long will the survey be available? I'm planning to keep it available until approximately August 8th. Can people with electrical hypersensitivity without internet access or a cell phone take the survey? Yes, if someone will contact me I can send out a paper form or they can have a friend with access fill it out while talking to them in person or on a land line. I want to be sure those who are most severely affected are still represented. What do I do if I have questions? On the consent page you will see my email address (jstone25@ewu.edu). I will also try to answer any questions on the thread in the group. Why did you do the survey? I have lived with MCS for over 50 years. It has caused significant financial hardship, worsened other medical conditions, and caused multiple moves to try to find safe housing. I personally understand the challenges and want to highlight this under-represented condition to organizations, healthcare providers, and legislators. Thank you for participating!