Long Island-born James Russell is a teacher at Clarkstown South High School in Rockland County, NY. Russell graduated from St. Thomas Aquinas College, received a Masters in Social Studies Education from NYU, and another Masters Degree in Education. Unlike many other people with primary lymphedema (LE), Russell’s disease didn’t present itself when in his late teens but, rather, when he was in his late thirties. Thanks to LE&RN, Russell recently consulted with Dr. Dhruv Singhal’s team at the Boston Lymphatic Center.
Can you tell us a little bit about your LE?
From what I’m learning, I was born with it. I’ve learned that it’s genetic, particularly on the maternal side of my family. In my late thirties, I started noticing that my feet and ankles were swelling. I thought I must be having too much salt, so I cut back on it. But then my legs started getting bigger and bigger. At that point I think I was somewhat in denial; that I would wake up one day and the swelling would be gone. I didn’t know what it was. In 2018, at a visit to a therapist, I was finally told it was lymphedema. I had never heard the word before!
What effect has LE had on your life?
Oh, my gosh, let me count the ways! For one, I’ve had to give up driving. My left leg is so swollen I can’t put my foot on the brake. I used to be very active and involved in sports and community activities. You name it, I did it. I was the first one out on the dance floor and the last one off when the band finished. Now the slightest thing—just thinking of it—wipes me out. I have lymphatic pools at the top of my feet, so I have a hard time finding sneakers that fit. That prevents me from walking, which then prevents me from being active as well. I just took a leave of absence from teaching. I need to be much more mobile to be able to handle emergencies in the classroom should they arise. Luckily I had a lot of sick days and I’m using those. My return date to the classroom is February 1st.
How difficult is it to find pants that fits and how did you solve that problem?
It’s impossible! My legs are enormous but one is even larger than the other. It was getting harder finding pants that fit, so I finally ordered a couple of pairs of Nike 6X sweat pants. They’re comfortable at least and, at this point now, everything is for comfort! But I decided that I wanted to wear regular pants as well so I could go out and feel confident about what I was wearing. I asked a friend if she knew a seamstress and she replied, “I do. My friend Maria.” They came by one day and I met fashion designer Maria of Maria Pia Design (see her page on our Expo). What she did with my pants was open up the seams on each leg and add a whole other panel of fabric to enlarge them. And since they can’t be tapered at the bottom, either, she made sure they were the same width all the way.
What did those new pants mean to you?
Confidence! And I feel like I’ve gotten my life back. For people like me, clothing is a big deal! I’m able to go out again and not to have to worry about what I’m wearing. I’m able to join my daughter Annie at school functions. I wish Maria would design clothing for men in my condition. I said to her, “You’d make a fortune.”
How did you hear about LE&RN?
From Maria as well! The minute she saw me she asked me if I had lymphedema. She then encouraged me to reach out to Bill Repicci, the CEO of LE&RN, who she knows. Bill and I subsequently talked for about an hour. Everything Bill said struck a chord. I kept saying, “Yes, I’m going through that, and that, and that.” Then, lickety split, Bill got me an appointment with Dr. Dhruv Singhal and his team in Boston. I went up there in July and it was absolutely wonderful! They have an incredible network up there. It was reassuring to know that at age 45 everything—including my heart—is okay with me except for my legs. And best of all, they have a plan in place for me! That was the most frustrating part for me before: the lack of a plan. Not that I didn’t try, but I didn’t have the proper tools. Now I do. Hopefully their plan will work and I can get some normalcy back in my life and be able to function again. Among other things, they put me on a weight-loss supplement. They want to figure out what is weight-related and what is lymphedema-related. They also wrapped my legs, and I responded very quickly to that. Now the nurses from a local hospital will be coming to my house five days a week to wrap my legs. I’m confident I will notice a big change by January, when I’m due back in Boston. From there they’ll figure out what more to do. In my case it can potentially be done without surgery, which I would prefer.
Are you still availing yourself of LE&RN’s offerings?
Definitely. Among other things, I connected with Veronica (Seneriz, LE&RN’s Patient Services Director). She was unbelievable. I cried because everything she said hit home! Vern said that because of LE, I wasn’t getting rid of all my toxins like normal people do and that’s why I’m always tired. I thought, “That makes sense now!” In the past I was just self-diagnosing myself but, in retrospect, I probably should have done my research a little bit better in terms of trying to find organizations that could help. But now that I know LE&RN is there, if I have a question I’ll post it on their site. Little by little, I’m discovering the amount of services it offers. And just knowing that there are other people out there in the same situation is huge, so I’m building a network as well. Is LE a horrible thing to have? Yes, it is. But when I put everything in perspective, I don’t have it any worse than others. And an organization like LE&RN helps me realize I’m not alone.