Today marks the start of the first ever LAM Awareness Month. June first was always LAM Awareness Day for several years prior. This year, it became an official awareness month.
For my professional friends, updated clinical guidelines on LAM can be found here.
It’s very important that these are shared with as many professionals as possible to help with earlier detection & diagnosis; as LAM often times is misdiagnosed.
During my early days, the LAM Handbook was extremely helpful to me if I had questions concerning lung collapses, oxygen, transplant, & more. It can be found through The LAM Foundation but I have also linked to it here. (There is also a spanish version available.)
One of the few comforts I had was donating my old lungs to research for LAM & TSC. Even if they are badly beat up the tissue is still useful & can help researchers. More information on how to go about setting up that arrangement can be found at this page from The LAM Foundation.
Many of us participated in a survey started by the American Thoracic Society (ATS) on oxygen delivery services. The results which can be found here, uncovered some serious issues & shortcomings with current oxygen suppliers.
Since a good percentage of LAM women do rely on oxygen especially when their disease progresses to severe stage, it’s vital we have partners like the ATS and the COPD Foundation to come together with us to try & make oxygen delivery a smoother & hopefully little less stressful experience if possible.
It also points out the need for new technologies that more durable & lighter-weight, & more lasting than traditional methods.
Additionally, the creation of LAM Clinics has helped provide accurate diagnosis & better care.
I received my diagnosis prior to a LAM Clinic being established, but for newly diagnosed people I think they are great start.
Since LAM is a rare disease, often times we wind up being our own advocates & it can be hard to know where to turn for care for serious issues.
Many of these clinics have caring clinicians that are also involved in research.
I remember the history of The LAM Foundation with fondness. I received a personal call from the founder when I was diagnosed.
I have often received important support & advice when I had needed them in weighing certain options. When I found out I needed a transplant, all the wonderful staff saw to it I had everything I needed to arrange the tissue donation.
They are a caring, hardworking organization but they have a deep love for those they help.
Occasionally, as my health has allowed, they’ve provided opportunities for me to get involved as I could, furthering my volunteer skills & helping me grow & obtain new skills.
I have met several wonderful people because of an otherwise awful disease. I remember my friends whom I have lost over the years, including two very special friends & several other shining stars.
A few of them changed my outlook on transplant.
The losses are tough as is the disease, but I’m hoping one day there will be enough treatments that work that women won’t need transplants, or won’t lose their life to this horrible disease.
But until then, I’ll do what I can to keep this disease in people’s minds & ears.
A cure may be possible someday, but I’d settle for widening the life expectancy of LAM even more than it is currently (10-20 yrs) & having more tolerable treatments available. When I was diagnosed in 2003, that life expectancy was only 5-10 years.
We are making headway, but we need to do more.