www.lighthouselymphedema.o Make yo 19 th State of Geo Awa Saturday, Octob Doubletree by H 3342 Peachtree Road NE (in Located across th (Map & Directions page: http://d hilton-hotel-atlanta-bu Featured presentations Keith Delman, MD, FACS – “Melanoma update, and trea Gwen Forbes-Kirby, PT/C lymphatics: Why rehabilitatio Guenter Klose, MLD/CDT, lymphedema treatment reco lymphedema therapy?” Nadiv Shapira, MD – “Trea Patients: Melissa Driggers (LE a patient who had liposuction surge Please register for the conferen .org LLN September 2 Find us (& great info) on F (LighthouseLymphedema@ Follow us on Twitter: @LL LLN: 23 years of serving community our plans now to attend orgia Lymphedema Edu areness Conference ber 22, 2016, 7:30 AM-4 Hilton Hotel/Buckhead n Tower Place complex), Atlanta, Georg 404-231-1234 he street from the Buckhead MARTA St doubletree3.hilton.com/en/hotels/geor uckhead-ATLBHDT/maps-directions/ind ns this year: – “Lymphedema secondary to gro atment for melanoma” CLT-LANA, STAR/C – “Breast ca on is important” , CLT-LANA - “Has recent resear ommendations? Is there an ideal atment of lipedema with liposuctio after melanoma surgery), Stephanie M ery), Allison Abney (LE after breast can nce using the flyer attached with th 2016 Newsletter Facebook: @LLymphedema ) Lymphedema g the lymphedema d! ucation & 4:00 PM Atlanta gia, 30326, USA tation rgia/doubletree-by- dex.html ) oin dissection”, ancer and the rch changed protocol for on” McLane (lipedema ncer surgery) his newsletter.
Transcript
www.lighthouselymphedema.org
Make your plans now to attend!
19th State of Georgia Lymphedema Education &
Awareness Conference
Saturday, October 2
Doubletree by Hilton
3342 Peachtree Road NE (in Tower Place complex),
Located across the street from the Buckhead MARTA Station
lymphedema treatment recommendations? Is there an ideal protocol for
“Treatment of lipedema with liposuction”
Stephanie McLane (lipedema
after breast cancer surgery)
Please register for the conference using the flyer attached with this newsletter.
Review of Fat Disorders Research Society Conference (by LLN Director Joan White) April 8-10, 2016 – Marriott St. Louis Hotel, St. Louis, MO
Lipedema and Dercum’s Disease were the points of discussion for this conference.
• Friday night was certainly memorable with the Fashion Show. • We began each morning with lymphatic yoga and also various times during the day we sat or stood and did
some breathing or yoga “moves”. It is simply amazing the movement you can get while sitting in a chair. • The diagnosis and treatment of lipedema and Dercum’s disease was discussed. • Eating nutritiously to reduce inflammation was encouraged by the food presented for the attendees.
Breakfast was hard-boiled eggs or scrambled eggs with oatmeal, yogurt and melon. Lunch was salad with salmon or chicken. “Your Gut” and “Eating Healthy” were presented.
• Self-performed manual lymphatic drainage was demonstrated as well as vibration exercise and dry brushing. Bariatric surgery, vein surgery and other considerations for patients with lipedema and Dercum’s Disease were discussed.
• The skit by Dr. Karen Herbst and Yvonne Russel, RN will never be forgotten. Laughs were plenty, as was the seriousness of these conditions/diseases.
• Patients’ stories are always enlightening. The challenge of being a patient and all the frustration and ”work” necessary to maintain one’s body did sound exhausting, but absolutely necessary for the best quality of life.
• Hats off to the planning committee for this conference - You did a fantastic job!
Joan White & Molly Nettles of LLN, and Pat Egan (new executive director of the NLN)
Speakers and invited guests at the FDRS conference dinner on Saturday night, April 9th
LLN-Sponsored Open Forum Meeting at Northside Hospital, Atlanta, April 7, 2016
Speaker Angelo Rizzo, MS, PT, CLT Victor Luciano, rep with BSNmedical Inc./Farrow Wrap/JoviPak
Our sincere thanks to Northside Hospital for hosting our Spring Forum! LLN was privileged to have as its speaker therapist Angelo Rizzo MS, PT, CLT of Therapeutic Solutions, Inc., and also to have Victor Luciano, Product Specialist, BSNmedical/Farrow Wrap/JoviPak present to demonstrate their products. Angelo presented “The Role of Exercise in Cancer and Lymphedema Care Plans.” [His article was just published as a meeting report in J Adv Prac Oncol (www.Advanced Practicioner.com) 2016; 7:3, 1-4.] Angelo shared that the role of physical therapy is generally minimized and underutilized during oncology treatments. Better identification and utilization of the role of oncology physical therapy is desperately needed to provide the best and most effective treatment of impairments related to patients undergoing chemo and/or radiation. With over 14 ½ million cancer survivors in the US alone, the need to educate the physician community about the benefit of PT during oncology treatments is significant. Recent statistics published by ASCO (American Society of Clinical Oncology) indicate that there are more oncologists retiring than entering the field, which yields less quality of time between patients and their oncologists. The use of physical therapy during treatment can cover gaps created by fragmentation of care, and provides a shared decision making environment (better care for the patient) and ultimately decreases costs and yields better results and outcomes (decreased occurrence of impairments, including lymphedema, during oncology treatment) for the patient. Angelo introduced another topic new to many of us – the science of myokines. Myokines are a specific type of muscle-generated and anti-inflammatory cytokine (proteins and peptides that send signals to other parts of the body to function0. The types of cytokines released during chemo are damaging, because they promote inflammation. A 2014 study revealed that a chemotherapy candidate’s genes can actually predict development of secondary lymphedema following breast cancer surgery! Myokines work in direct opposition to the cytokine genes. This study yields new understanding about the importance of muscle generation not only during oncology treatments, but in general for those with lymphedema. Exercise clearly plays a critical (and often minimized role) in patients with primary or secondary lymphedema, or patients with the potential to develop secondary lymphedema after cancer surgery and/or treatments. Victor Luciano then presented and demonstrated all of the wonderful compression products available from BSN Medical, including Elvarex, FarrowWraps, and the JoviPak, among many others. Feedback from those in attendance was extremely positive, and we left the meeting armed with more knowledge and understanding to share with other patients, physicians and caregivers with whom we interact. (The editor also thanks new Board member Melissa Driggers for taking great notes at the Forum!) NOTE: Congratulations to Angelo, who has recently completed his doctorate in physical therapy (DPT)!
2016 Lighthouse Lymphedema Network Calendar Dates to Remember:
• October 15-16: 2-Day Walk, sponsored by It's The Journey , Atlanta • October 22: LLN’s 19th Annual State of Georgia Lymphedema Education & Awareness Conference , 7:30 AM-
4:00 PM, Doubletree by Hilton Hotel, Buckhead Atlanta. • Thursday, November 17, 2016 Georgia Gives Day (online fundraiser to benefit LLN, but remember that you can
contribute ANY day through this mechanism) • February 2017: Medical Professionals Conference on Lymphatic Disea ses in Atlanta
• Spring 2017: Open Forum meeting at the Shepherd Center, Atlanta.
“What does it really mean to be a CERTIFIED lymphedema therapist?”
Why is LANA Certification important? When faced with illness, we strive to find healthcare practitioners with the highest level of expertise. Lymphology Association of North America (LANA) certification allows the lymphedema patient to identify therapists who have at least 135 hours of training through a qualified school that has honed their lymphedema therapy skills. The LANA certified therapist has passed a voluntary North American certification examination that tests the therapist’s knowledge of lymphedema management. The LANA certified therapist has demonstrated continued education and professional growth through the LANA recertification program. By choosing to be LANA-certified, you are affirming your commitment to delivering the best lymphedema care. You are allowing your clients and colleagues to know that they have chosen a highly trained expert in lymphedema management.
LANA’s Mission: The objectives and purposes of the organization shall be to promote standards for management of individuals with lymphedema and/or related disorders, to establish and maintain certification for healthcare professionals who provide such services and to promote lymphedema awareness and the science of lymphology. The Lymphology Association of North America (LANA) is a non-profit corporation comprised of healthcare professionals experienced in the management of lymphedema. Having recognized the need for a national certification examination for lymphedema therapists, LANA tests knowledge considered fundamental in the treatment of lymphedema.
LYMPHEDEMA LOBBY DAYS IN WASHINGTON DC
On April 18th, 2016, 74 advocates for the Lymphedema Treatment Act (LTA), representing 21 states plus the District of Columbia, gathered in Washington DC. Representatives for Georgia were: Sherilyn Bell, Melinda Smith, and LLN members Debbie Labarthe and Carson Sollenberger. Both Sherilyn and Carson are congenital primary lymphedema patients. The advocates spent two days on Capitol Hill and attended 214 meetings with Congressional offices representing 38 states! Through their personal stories and knowledge, they raised awareness about lymphedema, its causes and risks, the essential treatment component of compression supplies, and encouraged the Congressmen and Senators to cosponsor the Bills HR 1608/S 2373, the Lymphedema Treatment Act. Current (8/2016) cosponsor numbers are: 240 (House) and 23 (Senate). We still need more cosponsors, especially Senators! For more information about the LTA, go to www.lymphedematreatmentact.org. You can view a list of the current cosponsors as well as the phone numbers for all Congressmen and Senators. You can also view a template letter and follow the directions to personalize and submit it to your Congressmen and/or Senators who have not yet cosponsored the Bill. Every phone call and letter makes a difference!! Thank you!
Advocates at Lymphedema Lobby Day Advocates in front of the Capitol Building in DC
Don’t miss former LLN Board Member Janet Wolfson’s blog on wound care. The first one is entitled: “ The Unique Perspective Physical Therapists Bring to Wound Care.”
LLN OPEN FORUM MEETING at Emory University Midtown Hospital on August 18 Our thanks to therapist and LLN Board member Stephanie Kirkpatrick PT DPT CLT-LANA and the Emory Winship Cancer Institute for arranging our August 18th Open Forum Meeting at Emory University Hospital Midtown, Atlanta. We had a great turnout for this month’s Patient Open Forum! We were privileged to have speakers who discussed diet considerations and yoga for increased health benefits for patients with lymphedema or lipedema.
Tiffany Barrett, MS, RD, CSO, LD provided education on nutrition and dietary choices that can reduce general inflammation and therefore, can also improve management of lymphedema or lipedema. Generally speaking, an anti-inflammatory diet can be very effective in reducing these conditions in some patients.
Hope Knosher, RYT500, is a published author and the owner of Hope’s Yoga, and teaches an adaptive yoga practice for cancer patients and those with chronic illness. Yoga has been proven (through research) to be extremely effective in reducing fatigue and inflammation, and therefore, practicing gentle yoga (slow moving, rhythmic movements) while wearing our compression garments can be an excellent tool in managing lymphedema and lipedema. Many patients who practice gentle yoga report improvement of lymphatic flow by doing gentle yoga stretching and deep breathing. We were treated to a wonderfully relaxing Chair Yoga session, with very positive feedback from those in attendance. We certainly left the meeting more relaxed than when we arrived!
News from Caroline Aguirra at LLN’s International Outreach in Lima, Peru:
Hello everyone, I am forwarding a letter from Mr. Luis Vassi, a 78 year old entrepreneur who has overcome two oncologic
situations. His lymphedema was triggered by a bad fall and the cast that a physician put his leg into after that. He is not very
disciplined with CDT, but even just with compression and manual drainage, the swelling in his leg is notably under control.
Dear Sirs, I thank your organization for the Sigvaris compression stockings you have donated to me through the therapist
Caroline Aguirre, who is treating my lymphedema; I have this condition as a consequence of a surgery on the Scarpa Triangle
of the right leg to remove a liposarcoma. Mrs. Aguirre considers convenient to use compression every day for the better
treatment of lymphedema so I reiterate my thanks and appreciation towards the high altruism of your organization that has
given me the compression garments that I cannot purchase in my country. – Luis Vassi
Luis Vassi Berbe Loza
Carolina also sent a letter from another patient: “I write to you to thank you for the stockings to cover part of the
condition I am going through. Your generosity was reflected with the donation of a pair of stockings, and the good training
to use them correctly. Thank you very much to you, Miss Carolina Aguirre, for sharing with me this solidarity gesture!!!
With my best regards, Berbe Loza, Patient"
LLN BANDAGES & GARMENTS FUND
- Deb Cozzone, our Bandages & Garments Fund Administrator The Lighthouse Lymphedema Network’s Bandages and Garments Fund provides assistance for lymphedema patients whose medical insurance does not cover compression garments and who are in need of financial assistance to purchase the compression supplies that they need upon completion of lymphedema therapy. The patient must be under the care of a Certified Lymphedema Therapist who will recommend the patient for assistance. For more information about the Bandages and Garments Fund, contact Deb Cozzone at [email protected].
LLN Bandages and Garments Fund Recipient of Susan G. Komen Greater Atlanta Grant
The LLN’s Bandages and Garments Fund is a 2016-2017 grant recipient form Susan G. Komen Greater Atlanta. Many thanks to Shelley Smith-DiCecco for writing the grant proposal and winning a $7,450 grant to aid breast cancer survivors who need assistance purchasing the necessary compression garments. The Susan G. Komen grant monies will be available to survivors in the 13 county Greater Atlanta area, and have already helped 7 survivors get the garments they need.
Bandages and Garments Fund Update
The Bandages and Garments Fund is well on its way to a record-setting year in 2016. In the first 8 months of 2016, the Fund has already served 53 patients with over $21,000 worth of garments. 24 of these patients were assisted through It’s The Journey and Susan G. Komen grant funding and the remaining patients have been assisted through funds raised by LLN fundraisers, individuals’ donations and all of those who partner with the LLN to serve our patients. In addition to helping more patients, the Bandages and Garments Fund is also reaching further across the state of Georgia. Since January, we have committed to assisting patients in 8 “new” counties, expanding our service area to 45 counties across Georgia. “With much appreciation for all your help…People like you who help others in this world make it so wonderful for others,” writes one recipient. Another writes: “I so appreciate your agency’s generous gift of paying for lymphedema garments. I could never have afforded them on my own and they truly help with the lymphedema in my left arm.” The lack of medical insurance coverage for lymphedema garments continues to be a huge burden for individuals. As always, we encourage everyone—patients, caregivers, families, professionals, friends—to continue to support the Lymphedema Treatment Act. Check out their website at http://lymphedematreatmentact.org to see what you can do to become involved. This is a free and easy way to make your voice heard, and it can have a huge positive impact on lymphedema patients nationwide. Join the State of Georgia Advocacy Team—you can volunteer from your home as time permits! Attention all Certified Lymphedema Therapists: If you are not receiving updates from the Bandages and Garments Fund, please contact Deb Cozzone at [email protected]. On August 18 you should have received an email with the newest version of the application and recommendation. ALL future applicants must submit this new paperwork, so please make sure your current documentation has a revision date of 8/16.
Southern Loss Association Golf and Tennis Outing – LLN received $4065 from the sale of mulligans and ball tosses. "Founded in 1957, Southern Loss Association is one of the largest organizations in the country dedicated to education of property adjusters."
L-R: Ron Patrie, Peggy Meyer, Beverly Thompson, Joan White, Cheri Zorzoli LLN’s Peggy Myer wins the Ball Toss Game ($775!)
L: Team SLA headed up by Susan Freeman - Joan Peggy, Beverly, and Billie accepted $4,065.00 from the Southern Loss Association from the sale of
mulligans, the ball toss game and the generosity of a $1,700.00 donation from SLA. R: Milena Torres, representing Donan, sponsor of the mulligans table.
LLN Newsletter Editor Elaine Gunter gives an educational presentation on lymphedema to
Federal employee retiree group 6/16/2016
(Thanks to therapist Molly Nettles for slide content assistance!)
Annual Gloria Watts-Cox Lymphedema Run/Walk, June 4, 2016 On Saturday, June 4, 2016, the Gloria Watts-Cox Foundation (GWCF) held their 14th Annual Lymphedema Walk at Cliftondale Park in College Park, GA to raise awareness about lymphedema and honor those who currently suffer from the condition. The GWCF was founded in 2003 by Lee Cox, in loving memory of his wife, Gloria, who suffered from lymphedema for many years and passed away in 2002. Posing with Lee Cox (in purple shirt) and representing the Lighthouse Lymphedema Network were (left to right): Debbie Labarthe, Brent Voyles, Carson Sollenberger, and Deb Cozzone. (Not pictured: Tammy Malone and daughter, Ashley).
Saturday/Sunday, October 15-16 – It’s The Journey, Inc. & the Atlanta 2-Day Walk for Breast Cancer
The 2016 Atlanta 2-Day Walk for Breast Cancer is an annual fundraising endurance walk that takes place on October 15-16, and takes participants through 30 miles of Atlanta over the course of 2 days. Last year, over 1000 walkers committed to fundraising and training for this event. Since 2002, the Atlanta 2-Day Walk for Breast Cancer has funded 242 grants totaling $12 million to support breast health programs throughout Georgia. Their motto is “What’s raised in Georgia stays in Georgia.” To register for the 2-Day Walk, visit www.2daywalk.org. The LLN Board will have a cheering station on the route to celebrate participants in the Walk.
It’s the Journey has awarded LLN a $15,000 grant for 2016, so please support ITJ’s programs!
Additional Ways to Help LLN Help the Lymphedema Community:
If you haven't done so already, you might be interested in registering LLN with AmazonSmile. You probably already shop at Amazon, so you would simply need to select LLN as your charity and enter your orders via www.AmazonSmile.com instead of Amazon. It doesn’t cost you a single penny more. Registration and spreading the word would provide a path to ongoing donations. Here's the link to register the org. https://org.amazon.com/ref=smi_ge_raas_org_org Additionally, Kroger has a similar program, and it’s now time to renew for their next year: Here's the link to register LLN for their program: https://www.kroger.com/topic/kroger-community-rewards-3. If you already have an account, sign in, then click on your name to get to renewing your LLN selection under “community rewards.” Finally, Macy's has an annual shopping event program called Shop for a Cause. You can learn about it and register LLN here: http://shopforacause.macysinc.com/About.aspx More ideas for ways to help the LLN include hosting a bake sale or garage sale, with proceeds going to the LLN. Finally, don’t forget to ask your employer if they do matching funds for charities!
See the latest news at http://lymphedematreatmentact.org/
NEWS FLASH: The American Medical Association has endorsed the LTA as of May 24th, 2016! The Lymphedema Treatment Act (LTA) is a federal bill that aims to improve insurance coverage for the medically necessary, doctor-prescribed compression supplies that are the cornerstone of lymphedema treatment. Make Your Voice Heard by contacting members of Congress and asking them to support this important bill. The Lymphedema Treatment Act’s advocacy tools make it easy to take action. Currently, the House bill has 191 co-sponsors and the Senate Bill has 12 co-sponsors. We need more co-sponsors, so please get busy in every state and contact your Senators and Representatives now. Four of our 14 GA Reps have co-sponsored so far: Sanford Bishop (District #2); Henry “Hank” Johnson (District #4); John Lewis (District #5); David Scott (District #13). We need all 14 from GA and everyone in the state where YOU live!
New York Walk
to Fight Lymphedema & Lymphatic Diseases
gearing up to be biggest ever. Are you in for
#LymphWalk2016?
Twenty-five teams have already formed for the September 17 Walk across the Brooklyn Bridge. Read more about this event here; and sign up at LymphWalk.org. And please be sure to let us (and the world) know you support NY #LymphWalk by checking in on our Facebook event page.
Thank you, Lighthouse Lymphedema Network:
Please accept my gift/donation in appreciation for your efforts to support, educate, and create awareness about a serious medical condition called lymphedema.
Enclosed is my tax deductible donation of $_________, to be used for the General Fund _____, or the B.A.G. Fund ________
The Lighthouse Lymphedema Network is a 501(C) (3) non-profit organization. Please make all checks payable to the Lighthouse Lymphedema Network and mail to the LLN, 10240 Crescent Ridge Drive, Roswell, GA 30076. Call 770-442-1317 for information. You can also make a donation on-line by credit card: The donation page is: http://lighthouselymphedema.org/get-involved/donate.htm.
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Return service requested to: LLN Newsletter Editor 1625 Sprucewood Court Decatur GA 30033 USA
