Pulmonary Function Testing is not scary, but it can be a little tiring if you aren’t expecting it because the technician will be asking you to take lots of breaths, hold them, breathe in and out, blow out as hard as you can for some breaths, and do a lot of waiting in between. The test generally takes about an hour to complete. Taking all of these breaths in and out can not only make you dizzy, it can make you hyperventilate a little, but if you go in with the knowledge that this can happen, you will be less surprised if it does! You can make yourself rather anxious during these tests trying to do well — so the best thing to do is to go in as calm and relaxed as possible. Each test is repeated many times, so there is no chance of “messing up”. Be prepared for it to be tiring — get a good night’s sleep the night before, try to schedule your appointment for the morning, if possible. If you learn that you get lightheaded afterwards, learn to schedule your PFTs on a day when you have a light schedule.

Depending on what kinds of lung testing your doctor has scheduled for you (LAM patients will require different tests from asthma patients, and COPD patients may require other tests as well), when you get to the testing center, the technician will first check you in and go over with you what tests you have to do that day. He or she will likely give you a nose clip to plug off your nasal breathing, and a sterile mouthpiece collar similar to a piece of scuba equipment to fit inside your mouth that you will breathe into the machine with that will be testing your air volumes.

One standard and very common test is the FEV1, or Forced Expiratory Volume in 1 second. This is the amount of air that can be forced out of the lungs in 1 second. The range for healthy adults should be 80% to 120% of the average value. Other common parameters measured are Vital Capacity (VC) and Forced Vital Capacity (FVC).

In LAM, the FEV1/FVC ratio is important, as it is with other restrictive lung diseases, see your doctor for your own values and interpretations.

In its mild state, LAM can be easy to live with. In later stages, the disease is ravaging and deadly, and the women who have it suffer greatly, both from the disease itself and because the lack of awareness forces them to become patient advocates for rare diseases by default, something which takes a lot of effort. Let’s help them by spreading the word about this rare disease so more medical professionals know what it is.

This post is dedicated to all of the women in the last year who died from complications of LAM.

Many people find this website looking for information on asthma. Women who have LAM are often misdiagnosed with asthma, as the symptoms can be similar (shortness of breath, wheezing, chest tightness). Asthma can occur concurrently with LAM, but they are actually very different diseases. Asthma is an inflammatory disorder of the airways, causing a reversible airflow obstruction. Attacks can be caused by numerous things, and are mediated by all kinds of strategies, including inhaled medications.

LAM is not a disease of the airways, and it is not reversible. Rather, it is an irreversible disease of the smooth muscle of the lung, in which cysts grow and replace the tissue of the lung. Eventually the entire lung can become replaced with cysts, leading to respiratory failure.

This does not mean that if you have asthma you should suspect that you have LAM! LAM IS EXTREMELY RARE!

However, there are 1600 women diagnosed with LAM currently, and it is estimated that 250,000 – 300,000 women worldwide have LAM. We are trying to raise awareness of this disease so that more women can be diagnosed in the early stages and live a long life!! I am grateful to be hopefully be one of those!

The LAM Foundation’s Fundraising Description: The LAM Foundation is dedicated to funding scientific research in an effort to find a cause and cure for Lymphangioleiomyomatosis, or LAM, while offering knowledge, emotional support and hope to women with this fatal lung disease.

The LAM Foundation has a mandate to raise $1 per letter of LYMPHANGIOLEIOMYOMATOSIS, $24 closer to a CURE!

If everyone who lands on this blog could click over to my first giving page and donate just $24 to the cause, imagine how much money could be raised to help LAM find a cure. Come on, folks, I want to see those numbers add up!

So to move on with our very first volunteer…Catherine….

Catherine was diagnosed with LAM in 1996 and has gradually earned herself the title of “Pneumo Queen”. What does that mean, you ask… A pneumothorax is a major hallmark of LAM, and is another word for lung collapse. Our Catherine was diagnosed because of a pneumo (many women are diagnosed with LAM because of a first pneumo) and has had over 40 of these already! With LAM, the lungs can collapse and have to be inflated over and over again. Fortunately, some of these have been small. Catherine says she hopes to hang on to her crown, for the sake of her fellow LAM sisters. Thank you, Catherine… Catherine lived and worked in New York City until 2001 and then relocated to Maine. She is currently on a transplant waiting list (in Boston), like many other LAM women. She valiantly practices tai chi, qi gong and other meditation practices and though she can’t fly any more (most women at this point cannot go to altitude due to LAM and fear of lung collapse from the air pressure) she still travels cross country via train. Go Catherine! What an incredible spirit.

NEWS RELEASE: Lymphangioleiomyomatosis (LAM) is a rare, progressive, and frequently fatal lung disease that affects almost exclusively women, usually during their childbearing years. Symptoms may include shortness of breath, cough, collapsed lung, chest pains and/or fatigue.

Leaders from the LAM Foundation in the United States and and the leader of LAM organizations in 17 other countries came together last month to declare June 1st as an annual international day of awareness. Because LAM is such a rare disease, it does not usually get the media attention that other, more commonly diagnosed diseases often get.

The LAM Foundation has knowledge of approximately 1600 cases of LAM worldwide but it is estimated that there may be as many as 250,000 – 300,000 women with LAM who are currenly undiagnosed or misdiagnosed.

The Q Sensor has many, many uses — it’s been used in labs all over the world in its test phase and they released it today. It’s been used to help understand autistic children and emotional distress, it’s helped understand sleep research in a new way, it’s helped understand post-traumatic stress. The era of of wearable sensors for management of emotional well being has begun.

The company is selling it as a market research device for any company interested in customer reactions and feedback. Technology Review wrote a great article explaining this.

For the health community, the applications are vast, and have not even begun to be explored. I personally used it for learning how to relax and lower my skin conductance. I took long slow steady breaths, similar to a yoga class or meditation class, and was able to train myself to lower my skin conductance by biofeedback with the device.

The cost is high right now, but the more they sell, the more the price will go down

Visit Affectiva for more images and videos and to purchase a sensor.