| | | National Lymphedema Network
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| | Lymph e-Channel vol. 11 | November 2013
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Patients: We want to share your stories!Don't forget to send us a short paragraph of your experiences with lymphedema and a picture for us to publish! All submissions should go to robin@lymphnet.org.
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 Help Spread Awareness!
The NLN is creating FREE Lymphedema Educational Kits for all patients at risk for lymphedema. Please help us raise money for the campaign by creating your own page and spreading the word. It only takes a minute!
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 NLN's Support Community
Looking to correspond with others who have lymphedema? Look no further than the NLN Lymphedema Support Community sponsored by inspire.com
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| | | | Welcome to Lymph e-Channel Dear Friends of the NLN, It is my pleasure to introduce you to this issue of Lymph e-Channel. The topic of this issue, young thrivers, is one that is very close to my heart. I was diagnosed with lymphedema when I was 22, and, like many, I had a difficult time wrapping my head around having a life-long condition. In addition to normal lymphedema concerns, young lymphedema patients face a unique set of hurdles. How will I explain this condition to my friends? Will I be looked at differently? How am I going to manage my lymphedema alone after moving away from home? How will I explain my condition to someone I want to date? These are just a few of the issues young patients encounter along the way. This issue will show you that there are young patients through out the world who are not only living with lymphedema, but also thriving with it! Have a great holiday season! Best, Robin Miller |
 A Young Thriver: My Lymphedema Story by: Jordan Schessler As a senior in college, I can honestly say that living with Lymphedema while away at school is not all that different from when I'm at home. I am Jordan Schessler, and I was diagnosed with primary LE in my left foot and leg when I was just nine years old. By the age of ten, I had it on my right side, too. Let's hear it for symmetry! I had amazing results from my treatment at Lymphedema Therapy in Woodbury, New York and my LE remains stable due to daily care and compliance. I always had my parents' support at home, especially when it came to my LE care. So, it was expected that, when it came time for me to leave for college, I would question "How was I going to take care of my Lymphedema on my own?" I also pondered, "How am I going to explain LE to all of the new people that I meet?" Because I'd had LE since I was in elementary school in a small town, before long most people knew what LE was and it was known that I had it. However, I would be going away to Muhlenberg College and I would need to adjust to my new environment. Believe it or not, everything I had nervously anticipated worked out easily and more naturally than I ever thought possible! When it comes to explaining what LE is, I practically consider myself a professional. Whenever I would catch a new friend staring, I would nicely ask, "Hey, do you want me to tell you why I wear these garments?" Normally, my straight forwardness catches the person a little off guard, but almost always, they reply yes. I give a brief explanation at first: "When I was nine years old, I realized that my left foot was swelling... I went to a lot of doctors and none knew what was really wrong with me... my mom did a lot of research online and came across Lymphedema Therapy... I had a Lymphoscintigram to confirm... went for a kind of physical therapy... and boom, I live with garments and LE... until they find a cure!" If I'm asked more questions, then I start to fill in the details. Thankfully, at college I received the same reactions I had from most of the people I had met previously in my life, acceptance. I never ask that people feel sorry for me because this is the card that I was dealt and I know that I can and do handle it. Luckily, most people understand that, and recognize that LE is a part of who I am. The next hurdle to get over was washing my garments (and toe gloves and tributes, my nighttime compression) on my own! Fortunately, I have enough pairs to get me through a couple of weeks before I have to wash them. And, over the years, my mom and I have found that the gentle cycle on the washing machine is even better than hand washing! My new friends turned this into a bonding experience, matching the hang dried garments (by dates) on my dorm room floor and then turning them right side out. I very rarely had to match garments on my own because I always had a helping hand, or two! As a sophomore, I was initiated into the Xi Iota chapter of the Delta Zeta Sorority. (Happily, I am now the President!) While I was going through the new member process that fall, our new member class had to choose a charity to dedicate our philanthropy project to. During a meeting at which I wasn't present, they decided to donate to the National Lymphedema Network. Here was a group of girls that I'd known for only a few weeks and they were making such a heartwarming, meaningful decision. The next time we were all together, they said, "Jordan, we have something to tell you." Of course I immediately became nervous, but when they told me their decision and asked if I was okay with it, I was so overcome with emotion, I started to cry. After my next visit home, I brought all of them back "WE ARE HERE" LE bracelets and they wore them all semester. I was so proud of their decision and even more proud that Delta Zeta could contribute to the National Lymphedema Network. These are just a few of my positive experiences being a young woman living with LE in college. Like a typical college student, I go to classes, have meals with friends in the dining hall, work out at the gym, and go to lots of parties! Lymphedema has never diminished my life. In fact, it has had the opposite effect by allowing me to spread positivity and optimism through other peoples' lives. As I concluded my college admissions essay, I have Lymphedema...Lymphedema does not have me! |
Lymphedema in Young Patients by: Bonnie B. Lasinski, MA, PT, CI, CLT-LANA Living with lymphedema presents its own unique challenges regardless of one's age. When we are working with young children and adolescents, we work not only for and with the child but also with their parents/caregivers. Our goal is to transfer responsibility for daily care slowly from the parent/caregiver to the child/young person knowing that this is not a linear progression. As therapists, we must provide education, explaining lymphedema's pathophysiology, its presentation and potential for progression as well as ways to manage the daily challenges faced by individuals living with LE. These challenges vary greatly depending on the person's age, individual situation and time in their life. Interventions must be individualized- what works for one does not necessarily work for the next person. For very young children, the challenge is to support the parents and to provide safe ways for the children to be able to participate in athletics as well as recreational sports, dance, gymnastics, and other youth activities while protecting the involved limbs/areas. Finding ways to streamline home MLD and dealing with compression garments/bandages is critical for busy parents/caregivers. Prepping them for the inevitable "emergencies" (cellulitis, injuries/sprains/broken bones/allergic reactions) helps to quell fears that their child will not recover from these episodes. For adolescents and young adults helping them deal with issues of clothing style, compression stockings, sleeves, gloves and helping them incorporate their compression into their wardrobe is crucial if we are to help them adhere to their recommended self-care program. It may be necessary to "compromise" on level of compression - for example - a sheerer stocking of color or pattern for social events. While it might not provide optimal compression, it might make the difference for someone struggling to adhere to wearing compression at all. The important thing is to provide support and a comfortable atmosphere - a haven - where patients feel they can come and discuss their issues and get help - not judgment - in solving the problems they face living with LE. While it is important to assess limb volume measurements, skin integrity, and function and wear of compression garments, we may find other issues are just as important and perhaps more important to the individual. This might include issues such as personal intimacy, dating (how does a person tell their date about their condition) as well as concerns for safety during activities where there is risk of injury to the lymphedematous limb/s including how to explain to a coach the necessity to wear a compression stocking/sleeve/glove during athletic competition. Through it all, one of the most important things we provide is continuing education - putting the individual's condition in perspective, encouraging adherence with self-care - striving to tailor the program to make it doable for them. It has been my honor and privilege to be invited into the lives of my patients. I hope I have helped them to solve some of their challenges,to accept some of the things they cannot change, and to find a way to live happily and comfortably with these challenges. We have the opportunity to help our young patients connect with their peers who also have lymphedema and can mentor these "newbies" by sharing their personal experiences living with LE and strategies that have helped them to live successfully with their condition. Therapist instruction in self-care, exercise, and managing compression garments is a key part of lymphedema management. Nothing, however, has the impact of a peer who has lymphedema explaining to their peer how they came to realize the importance of self-care and how adherence impacts long-term outcomes in lymphedema. The "newbies" eventually pay it forward by becoming the mentors. My patients tell me that being able to help another person new to the diagnosis or treatment of lymphedema is a great boost to their self-esteem and confidence. And speaking of mentors - I have known Jordan Schessler since she was 9 years old and I am so proud of the young woman she has become and delighted to read the wonderful article she wrote for this issue. My advice to LE practitioners whether they be - MD, RN, PT, OT, MT -- is to be open and to listen - not only to the words spoken but also to the emotions and feelings behind those words. We provide a service for our patients, but more than that, we can provide a place where they can share their challenges and know that they are heard and understood. Every individual is different - some want to include their friends and family in their personal LE management process - and share with them the details of their daily self-care routine. Others are more private and for them this is a different kind of challenge - finding the time and the motivation to complete self-care while maintaining their dignity and privacy. Which ever path our patients take, we can be there to support them. Lymphedema Therapy Woodbury, New York |
 REVIEWS:  Patient: I was diagnosed with Primary Lymphedema (Milroy's Disease) when I was 8 years-old. That was 13 years ago. Back then, the fabrics were thick and stiff and had a tendency to pinch and chafe. medi's new garments are amazing! The fabric is breathable,soft and doesn't pinch. Being a young woman, I am always self-conscious of my appearance. medi's new garments come in a variety of stylish colors. I have 2 different colors. My nude/tan garment is almost identical to my skin tone! You can barely tell I am wearing it! But, my favorite garment is black with silver crystals on the side! I work as a receptionist for a doctor's office, and I recommend medi garments to all of my patients looking into using compression-wear!
Jennifer Spilman Therapist As breast cancer becomes more widespread and affects a younger demographic, so increases the number of patients with Lymphedema. My Lymphedema patients express a range of emotions, from sadness to bitterness, toward their newly discovered lifelong diagnosis. I've even had patients go so far as to say that Lymphedema has interrupted their life more than cancer. Having the conversation of around-the-clock compression is never easy, especially when discussing the need for consistent daytime compression. Younger patients who work, travel and lead active social lives may be reluctant to wear compression garments out of the house in a world where fashion contributes greatly to identity. medi flat knit compression garments are my foremost recommendation for patients with upper extremity Lymphedema as these garments offer sufficient strength to prevent refilling edema. When I began my career as a Lymphedema therapist ten years ago, these garments only came in one color: beige. Now medi offers flat knit compression garments in multiple colors that have certainly made my job easier. Thanks to medi, I am able to present options to match my patients' skin tones and/or fit with their individual style. We have so many colors now and even inspirational offerings with the new "Live, Love, Laugh" sleeve. Patients feel more confident and comfortable in their compression sleeves, and more importantly, the patient feels secure knowing their swelling will be appropriately contained. Bryan Groleau COTA/L, CLT-LANA Clinical Director, Jacksonville Lymphedema Clinic 
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| | National Lymphedema Network, Inc.
116 New Montgomery Street, Suite 235
San Francisco, CA 94105
Hotline: 1.800.541.3259
Tel: 415.908.3681
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The inclusion of advertising, logos or Web site links within this electronic publication does not constitute an endorsement by the National Lymphedema Network, Inc. of the products or services so advertised.
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