Going to Oxford on Wednesday

As some of you may know, I am traveling to England on Wednesday. This past week – MONTH! – has been incredibly busy. It’s amazing that I am not even working a traditional 8-5 job at the moment and I still can’t seem get everything that I need to get done in a day. But I suppose that moving plus holidays plus Scottsdale plus work projects plus major event in February plus a trip to Europe sort of makes for a crazy couple of months.

In any case, I am going to London and Oxford on Wednesday. The circumstances for traveling to Europe could definitely be more exciting; I am going for a global research conference about LAM, the rare disease that my mom was diagnosed with nearly 6 years ago.

Organized by the LAM Treatment Alliance (LTA), a fairly new organization that’s fighting this disease, the conference will be at Oxford University from Friday through Sunday.

LTA has been working to build networks that support research globally. The 3-day meeting that I’m going to will work to identify concrete steps to ensure that patient coordination is working, and is helping to make research progress in the fastest time possible. How I am interpreting that goal is this: there are many things that need to be done to solve LAM, and patients need to be involved. Researchers need LAM tissue, they need access to LAM patients so they can track their disease, and they need to have willing subjects in which to introduce new drug treatments. LTA is just working to identify how this might work on a global scale, with less than 1,500 diagnosed LAM patients in the world.

Researchers are also going to provide updates on their clinical trials underway, and on ones in the pipeline. They will also talk about ways for LAM patients to coordinate with researchers and drug companies seeking candidates for drug trials.

This last reason -- drug trials -- is why I am most interested in attending the seminar. My mom has been on an experimental drug, Rapamycin (or Sirolumus), for over two years. While it has seemingly slowed her progression, it hasn’t come without serious complications. Most recently, her blood pressure and cholesterol have shot through the roof, sending her to the emergency room this past fall. She was also diagnosed with mild renal insufficiency, meaning her kidneys have been affected by the toxicity of the drug. Her physician took her off of Ramapycin for a month, and was somewhat reluctant to put her back on it. If the day ever comes where my mom needs a lung transplant, all of her other organs need to be very healthy in order for her to be eligible to receive new lungs.

Her physician, Dr. George Pappas at Minor & James Medical is a wonderful, caring doctor and we are so lucky to have him. He weighed the options and decided to put my mom back on the drug but at a lower dosage. I think that she has been feeling the effects of a lower dosage – her breathing has been a bit tougher lately. All of this is motivating me to seek new treatments for her, and I’m hoping that this conference unveils some new hope on the horizon.

It’s not easy dealing with a chronic disease in which nobody has answers for. The day-to-day reality of it is hard on my mom, her husband, and on me and my sister. People ask me all the time, “How is your mom doing?” This is a really tough question to answer. My mom is sick and as far as we know, she will remain sick for the rest of her life. This is not easy for anyone to deal with – however, many people are sick, and many people are more sick than my mom. And all of us, in all likelihood, will be sick someday. It’s just a crappy part of life that hardly anyone can escape.

There are some diseases, however, that just seem unfair. LAM strikes women in the prime of their lives – usually in the childbearing years. Many women are diagnosed during pregnancy because the fluctuation in hormone levels accelerate the disease. As in LTA founder Amy Farber’s case, many women are diagnosed just about when arguably the most exciting things in your lives are occurring. Amy Farber had just gotten married and graduated with her PhD from Harvard. She was about to enter her chosen field (social anthropology) and was thinking about beginning a family when she was told she very well may have less than 10 years to live. Her academic track record proves that she is a go-getter and probably wasn’t willing to let a disease like LAM stop her from her plans, so she established the LAM Treatment Alliance with the goal of accelerating research. She’s beautiful, stylish (love that outfit!), smart, and apparently worthy of receiving Glamour’s “Hero of the Month” (the highest of honors) last May:

In any case, while I am not really excited about traveling to England by myself to talk about LAM for 3 days straight, I do really hope that the conference unveils some new options, and inspires me - and others - to continue fighting this disease that takes too many young women’s lives.

Read more about LAM and the LAM Treatment Alliance right here. There's also a really great article about Amy and her work in fighting LAM in the Wall Street Journal.