Written by Jennifer Edmondson and Teresa Iattoni with Breanna Delrow
People who live with multiple health issues know how debilitating and unrelenting those challenges can be. Jennifer Lee Edmondson, JD, founder of Health, Education & Welfare, a Wisconsin nonprofit, and one half of the Lymphatic Duo, was 50 years old when she was diagnosed with metastatic breast cancer. But by then, she was an adult ‘of a certain mature age’, and had experienced numerous other life challenges in the decades before her diagnosis, which she concedes still did not fully prepare her for the physical and emotional trauma that awaited her.
But what about young people who must face lifelong, multiple health challenges, but have not had the benefit of decades of life experience? Those challenges can impose extra burdens on young people, and can be more difficult and complicated than those faced by mature adults. In an article published in Psychology Today, author Toni Bernard wrote that young people facing chronic illness or multiple health challenges carry several extra burdens, especially when their conditions are not open and obvious.1 Those extra burdens include:
• Being treated as if their health issues can’t possibly be chronic.
• Being told, “You’re too young to be in pain.”
• Worrying that they’ll never find a romantic partner.
• Not being able to complete their education or professional goals.
• Sitting by and watching others their age participate in activities that are out of reach for them.
• Being stigmatized by others.
• Worrying about the future.
The good news is, there is always hope. Every new day provides us with a new opportunity for making good things happen. Here, the Lymphatic Duo - Jennifer and Teresa Iattoni, DPT, CLS, CES, share Breanna’s story, and useful tips on how to manage living with multiple health challenges.
Breanna is a recipient of HEW’s Compression Garment Fund Program. lebontadipio is the Catalyst Level supporter, an integral part of making the program possible. A licensed certified nursing assistant (CNA), Breanna is also a longtime patient of Teresa’s. The Lymphatic Duo marvel at the fortitude with which Breanna has faced her multiple health challenges.
Recently Jennifer had the chance to talk with Breanna, who was gracious in her openness and willingness to share her struggles and the insights she’s gained from them. It’s clear that this remarkable young woman is forging ahead and doing her utmost to live life to the fullest.
Tell us about the health conditions you have, which require you to wear compression garments.
I was diagnosed my sophomore year of high school with primary Lymphedema of my right leg, and in June of 2021 with Deep Vein Thrombosis (DVT) of my right arm. The official DVT diagnosis is a form of a bleeding disorder called PAI-1, which causes the body to clot, and which has caused four clots in my arm. The clots have damaged the valves in my veins which have caused the swelling of the arm.
How have these conditions affected your every day life – physical functioning, as well as emotional functioning?
My conditions have been damaging to my physical health in a variety of ways. First, is needing to wear garments. Garments/swelling can make it difficult to do everyday things as you have to be mindful of when you have on your garments and when you are providing self-care for swelling, such as having to do self-wrapping of my leg and my arm. Self-wrapping is never easy to do by yourself, because it’s hard to get the right level of compression, especially if you have to wrap your arm. Trying to tape my arm with kinesiotape is very difficult also.
I’m on blood thinners, which make it more difficult to enjoy life as you have to be a lot more cautious. Being on blood thinners and my PAI-1 diagnosis, if I bump my leg or arm, I can end up bleeding into my joint, which puts me at a high risk for forming blood clots. If I happen to bump my head, there’s the risk of sustaining a serious head bleed.
All of these things cause emotional difficulties as you are constantly worrying about the risk of injury, swelling, preparing for it, and worrying about your medical appointments and care. These worries are always on my mind. It’s hard to switch off that switch and not be worrying about what might happen to me.
Do these health conditions prevent you from doing anything you either used to do, or would like to do? Do they limit your ability to do things?
Yes. These health conditions prevent me from doing the sports/working out that I used to do. For instance, I used to play basketball and softball in school, which I really enjoyed. I used to run for exercise, and roller blade. Now I can’t do any of these things, because of the high risk of hurting myself. A ‘minor bump’ for others is actually a serious danger to me.
My health conditions also prevent me from being outside for too long, because the heat causes swelling. And the blood thinners prevent me from doing anything considered too dangerous, because I have to be extra cautious - such as hiking, water sports, riding a bike, exercising on a treadmill, riding a scooter.
What has been the effect on your emotional well-being?
This has caused me a great deal of anxiety: constant worry about when am I going to swell up, which doctors do I need to see, how I will pay for my healthcare and treatment, will it get better, will it get worse, etc. This anxiety feels overwhelming. I have suffered from panic attacks, and I’m on medication. But even with medication I still have about three panic attacks per week. When I start feeling a panic attack coming, I use a technique my therapist taught me, the 5-4-3-2-1 method. Five things you see, four you feel, three things you hear, two things you smell, and one thing taste. It grounds you back into reality as to what’s really going on around you at the moment. This has been very effective for me, sometimes I need to repeat this technique, but it seems to be the most effective.
Have you felt stigmatized because of your medical conditions?
Yes. Because people don’t understand that I have chronic illnesses, not like a flu that I’ll get better from. I’ve experienced stigma in my personal and professional life, people not accepting that my medical conditions will never go away.
How do you deal with those effects on your emotional well-being?
To help with my anxiety I find therapy, my religious faith, and community to be the most helpful. I don’t know where I would be without these three things. Therapy helps me to break down what is happening in my life and provide helpful coping strategies to manage it. My religious faith is my comfort. And community is a constant support in a variety of ways, because I learned I cannot do it alone. My community includes my small groups through church, my close-knit friends who I can lean on and talk to. They understand my medical conditions and I feel open to talk to them. My friends have become my family. And I have co-workers who have become very good friends.
What insights have you gained through all of this?
I have learned to trust more in the Lord during the hardest struggles. I have learned more of what others with chronic illness go through, and how to make it through. And I have gained a great deal of medical knowledge as I navigate through my own medical struggles.
What would you like to tell readers or wish that they would know?
I would want people to have grace. Some days are better than others, and you just have to take it day by day. But we are normal regular people who just have a different battle than they do.
What advice do you have for people, especially young people, who are also facing health challenges?
To any young person with health issues, I would just say that these challenges are surmountable. Surround yourself with a good community because you cannot do it alone. And if it gets overwhelming, ask for help. There are people all around you that want to help and don’t know how. Tell them what you need. Be your own best advocate. You’re worth fighting for.
What compression garments have you used in the past, and are you still using any?
It’s important to remember to get properly measured and fitted for compression garments, and having a healthcare professional, like a certified Lymphedema therapist, prescribe or recommend which compression garment is right for you. If you wear a compression garment that is too tight, you can make your condition worse and run the risk of causing permanent damage. My certified Lymphedema therapist measured me, and made recommendations. I always used Jobst for my leg. And for my arm I have used Jobst, Juzo, and LympheDIVAS. I have to wear compression arm sleeves every day, because my vein valves in my arm are permanently damaged and my arm and hand will swell up. My doctors have advised that there is no cure, and no fix for my condition. I have to live with this for the rest of my life. So wearing compression arm sleeves every day is essential for me.
Tell us about your work life. You’re starting your own business, right?
After graduating high school, I went into CNA work. I did that until 2021. After that I did secretarial work. Currently I work at a coffee shop, and I’ve started my own business, Special Memories Homecare, providing individualized and personalized in-home care. My clients include people who are homebound, elderly, and people living with Dementia. My goal is to operate my business on a full-time basis in the near future.
You previously worked for a large healthcare system. Did your employer’s health insurance or their private foundation provide you with any assistance for your compression garments?
My health insurance covered my Lymphedema therapy, and I was able to have quality therapy. But most of my insurances did not cover compression garments, or they did not provide enough coverage. Though that healthcare system does have a multi-million dollar private foundation that is described as helping patients, they do not provide any assistance for compression garments. So fortunately, I found HEW’s Compression Garment Fund program.
How has HEW’s Compression Garment Fund Program helped?
The fund has helped my significantly! It has helped me get my medically necessary compression garments, and to get them right away so that my care wasn’t delayed. HEW also helped me with gaining extensive knowledge about Lymphedema through their Advances in Lymphedema Care conferences, where they brought in experts in Lymphedema, and representatives of companies that make Lymphedema products.
I think the Fund is a brilliant thing, because compression garments aren’t always covered, and they are not cheap. It always benefits patients to not have to worry about making the decision of taking money out of their budget vs. not wearing their garments. It provides comfort knowing you are taken care of.
Share with us your future hopes and dreams.
I’ve started my own business providing in-home care for people looking to age at home. Unfortunately, my health concerns removed me from my old dreams of becoming a nurse, due to the lifting restrictions. But now I have bigger dreams and I’m still able to pursue my dream of caring for people and providing excellent care, this time just in their homes. And as my own boss.
Teresa’s Tips.
Here are some simple and easy tips, from Teresa Iattoni, DPT, CLS, CES, of the Lymphatic Duo, for coping with and managing multiple health challenges:
1. Be your own advocate. In our current healthcare environment, it is imperative for each patient to be their own advocate. Breanna, at a very young age, intuitively knew the importance of gaining knowledge about her condition and fearlessly asking questions of her providers. By doing this, Breanna empowered herself to becoming her best self-advocate.
2) Build your medical A-Team. A critical step in maximizing a patient's care is the formation of a great team of professionals. A team that critically analyzes the patient's needs (which means professionals who will actually listen to the patient), and provides evidence-based care in a patient-centric fashion is the ideal.
3) Tend to your emotional/spiritual health. The connection between the mind, sprit and body is very important to overall well-being. Breanna has gone through multiple medical challenges and her faith has played an important role in guiding her, and helping her to remain optimistic in the face of adversity.
4) Listen to your body’s signs, and act on them quickly. Listening to your body is imperative to addressing early symptoms of infections (such as cellulitis) or DVTs. Symptoms of infections include: redness, rash, warmth, fever, chills, pain, and wounds. DVTs: predisposing risk factor (travel, surgery, clotting disorders), pain, swelling, warmth, and discoloration.
Health, Education & Welfare was very happy to have been able to help Breanna to obtain her medically necessary compression garments. HEW was able to provide Breanna with garments almost immediately after receiving her application, through their Donated Garments Program, in which brand new, unused compression garments were donated by lebontadipio. According to Jennifer, HEW’s founder and CEO, “We created The Compression Garment Fund Program to fill a need that was not being met. We are still the first and only program in Wisconsin helping people to obtain their medically necessary compression garments. I feel compelled to say that it’s shameful that in this day and age, there are so many healthcare systems that will not help their patients to obtain their compression garments. No one should have to go without compression garments that are medically necessary to maintain good health.”
The challenges facing young people with multiple health concerns are frequently overwhelming and disheartening. As Breanna stated, the reality is each of us has our own ‘normal’, and we must find ways to accept that reality, and find ways to not let those challenges get in our way. Finding good friends (especially those who also face similar challenges) and healthcare providers is a good start. Remember, as Breanna said, “You are not alone.”
Breanna continues to face her many challenges, on a daily basis, and acknowledges that some days will be better than others. But she works hard to keep her focus on living the best life possible. Hers is an example of what can be accomplished through one’s own efforts – seeking out accurate information about one’s conditions, seeking out and surrounding ourselves with a good support team (medical professionals and social support), and learning to listen to our own bodies when there’s something ‘not quite right’. We all recognize that what Breanna has accomplished has been the result of a great deal of effort and hard work on her part.
Breanna’s story is an excellent example of how one young person, facing multiple health challenges, is finding ways to manage those challenges, and to pursue her interests and life goals the best she can. She’s successfully doing it. And so can you!
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References:
1 Bernard, Toni, “The Extra Burdens Faced by Young People with Chronic Illness”, Psychology Today, March4, 2014, https://www.lebontadipio.com/us/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness
]]>The Basics
Hydrate! The more water you drink, the easier it is for your body to regulate its temperature.
Wear loose clothing to avoid overheating and to make you more comfortable.
Avoid salty foods to prevent dehydration and swelling.
Skin care is important! Make sure to moisturize your skin multiple times a day.
Wear compression stockings while traveling and take frequent breaks on long trips to walk around.
Stay in the shade as much as possible and don’t forget your sunscreen!
Skin Care
During the summer months, it’s important to protect your skin from the sun and moisturize frequently. If you have lymphedema, getting sunburn can damage your lymphatic system, resulting in overly sensitive skin. Make sure to apply sunscreen before heading out, but try to avoid applying it to areas covered by your compression garment. Suntan lotion can cause the material to deteriorate faster and can irritate the skin underneath the garment. You should also put on bug spray to avoid infections, cuts and discomfort. Try to use natural bug spray to eliminate unwanted chemicals such as DEET on your skin. If you do get bit, make sure to carefully wash and dry the area and apply a hydrocortisone cream.
“If you are going camping or hiking, be sure to take along a specialized first aid kit. The kit should include alcohol wipes to clean off any skin break, antibiotic cream for application on the skin, and bandages to protect the area.” – National Lymphatic Network
If you have dry or cracked skin, try using Remedy Skin Repair Cream. It is non-allergenic and great for those with diabetes or sensitive skin. If you are looking for a cream that won’t clog your pores, isn’t greasy and can be used with compression garments, try the Cutimed ACUTE Cream Mouse to moisturize your skin. It is perfect for people with diabetes, lymphedema or those with damaged skin. It is available in three different strengths, depending on what you need. For an everyday lotion that is also safe for compression garments, apply Medi Day Gel. This fast absorbing gel makes it easier to get your compression stockings on without the greasy residue.
Comfort is Key
During the summer, make sure to wear loose clothing to stay cool and to avoid restricting the flow of your lymphatic system. One of the most important things when you’re out in the sun is to wear comfortable shoes. Check out the new Dr. Comfort summer shoes for men and women. They are great for those with diabetes, plantar fasciitis or sensitive feet. They provide additional cushioning and shock absorption to keep you comfortably on your feet all day long. Nothing’s worse than tired feet halfway through the day!
Summer is one the best times for traveling, but it can also be the most uncomfortable. Whether you are flying, driving or traveling by train, make sure to wear your compression stockings! Sitting for long periods of time is bad for circulation and can lead to fatigue, swelling and more serious complications. If you are driving, make sure to use the air conditioning and stop as much as possible to get out and stretch. If you have lymphedema, try to keep your affected limb as elevated as possible. If you take a plane, the lower air pressure can aggravate lymphedema. If you have lower extremity lymphedema, try to get an aisle seat so you have more leg room and can get up to walk around more frequently without the difficulty. If you have lymphedema in your arms, make sure to carry a light carry-on or get a rolling suitcase to avoid heavy lifting. Again, make sure to stay hydrated while traveling!
How to Keep Your Cool in the Summer
If you have lymphedema, you know the importance of staying cool. When you start to feel overheated, try taking a cool shower and elevate the affected limb in an air conditioned place. You can also wrap the limb in a cold, wet towel and elevate it as well. To avoid getting your compression garment wet, the National Lymphatic Network suggests putting a plastic bag between the garment and the wet towel. This avoids skin irritation and damage to the garment. If you have upper extremity lymphedema, check out Lymphedivas. These fashionable compression armsleeves are made with moisture wicking fabric to keep your arm cool and dry. They are lightweight and are infused with aloe vera to soften and moisturize your skin. They are latex and silicone free, and made in America. To stay cool with compression socks, thigh highs or pantyhose, try an open toe stocking. This style is great to wear with sandals or other summer shoes.
It is also important to wash your compression garments daily, especially in the summer. Frequent washing is better for compression stockings because it helps to maintain its effectiveness and prolongs the garments lifespan. Regularly washing compression garments also helps to get rid of dirt and oils that can reduce the effectiveness of the garment and avoids bacteria that can cause skin irritation or other complications. Plus, lotions that aren’t safe for compression can cause the fabric to deteriorate faster.
Diet
Eating healthy is important for more reasons than getting the perfect “beach body.” During the summer, it is vital to avoid salty foods because they can lead to swelling, water retention and bloating. Instead of grabbing a soda and chips, snack on fruits, vegetables and nuts. Make sure to get lots of protein and to eat a big, balanced breakfast to keep your energy up all day long. Avoid foods with lots of carbohydrates and sugar to keep you from craving sweets and junk food. Eat 3-5 small meals throughout the day and make sure you’re not hungry. When you don’t eat enough, your body doesn’t get the nutrients it needs and can lead to fainting, dizziness, exhaustion and fatigue. Most importantly, drink lots of water to give your body the oxygen it needs. Dehydration can cause you to feel overheated, so stay cool with a nice, refreshing glass of water.
Exercise
The summertime is great for exercising and playing sports, but it is important to take it easy. Physical activities you do in the winter won’t affect you as much as they do in the summer because of the heat. Even though you typically run 5 miles in the winter, you may not be able to run as far in the summer. The heat can cause your lymphatic system to “overload”, which is why many people with lymphedema dread the summer months. However, the heat doesn’t have to prevent you from going outside and enjoying yourself, you just have to be more careful. Make sure to exercise for a shorter amount of time and to take a lot of breaks. If your arm or leg starts to ache, hurt or feel irritated in any way, go inside to cool down and elevate the affected limb. This is a sign that your lymphatic system is overloaded.
Swimming is recommended for those with lymphedema. Make sure to moisturize after swimming in the pool to avoid dry skin. Once you are out of the water, remember to put your compression garment or bandages back on as soon as possible. You can use an old garment if you want to swim with one on. Remember to rinse off after swimming and dry completely to avoid infection and skin irritation. If you have lower extremity lymphedema, make sure to wear shoes at the pool whenever you’re not in the water to avoid bacteria or getting cuts or scratches that could get infected. If you have a cut or open wound, it is best to avoid swimming until after it has healed.
Resources
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Thelma Jones is making remarkable strides in breast cancer awareness. As a community activist for over 30 years and a breast cancer survivor herself, Thelma understands the importance of cancer awareness and education in her community. In fact, she was named a White House Champion of Change in 2011 for her leadership in the fight against breast cancer. She also received the Mayor’s coveted Community Service Award in the Lifetime Achievement category in 2010. Most recently, Thelma won the 2015 Thurgood Marshall Center Trust Phenomenal Woman Award.
In June 2007, Thelma was diagnosed with breast cancer. Shortly after, she became a certified breast-health educator with the American Cancer Society to work with cancer patients who had recently been diagnosed. After undergoing surgery, chemotherapy, radiation and hormonal therapy, she was able to win the fight. Thelma was inspired to give back to her community and share her story with others. Thelma believes that screening saves lives. She is working on educating people about the importance of regular checkups and knowing what symptoms to look for. The American Cancer Society says that women over 40 years old should have a mammogram done every year.
“Almost from the inception of my diagnosis, I vowed to fight back and use my voice to increase funding for cancer research and to make it a national priority.”
Thelma Jones is currently living in Southwest Washington, D.C. (our hometown!), working as a breast-cancer navigator for Smith Center for Healing and the Arts. Her role is to help her clients find care, schedule mammograms and answer their questions. Thelma emphasizes the importance of finding a good doctor that you trust because you should never feel uncomfortable asking the tough questions. Her goal is to share support and guide patients through this process, showing them the positive side of life after cancer.
Thanks to Thelma’s dedication and passion for her community, she started one of Southwest’s only breast cancer support groups. “Sometimes I would invite people to my house or out on the stoop to talk about breast cancer, and people started saying I had a support group – so I created the breast cancer support group,” said Thelma Jones. The ACS Breast Cancer Support Group in Southwest D.C. has helped over 300 men and women, especially those who are struggling more than others – the ones who have to choose between picking up their medication or paying the bills.
According to the Centers for Disease Control and Prevention, cancer is the second leading cause of death of women in Washington, D.C. If you want to get involved, you can donate to the American Cancer Society, or sign up for an event near you. You won’t want to miss the Relay for Life!
In the picture on the left, check out State Lead Ambassador and breast cancer survivor, Thelma Jones (far left), as Councilmember Cheh presented a breast cancer awareness month proclamation at the City Council meeting. The picture on the right is of Jennifer Aniston (left) with Thelma Jones (right) at the White House in honor of Breast Cancer Awareness Month.
Resources
Three Minute Interview with Thelma
What is a Breast-Cancer Navigator?
Where to Find a Support Group in Your Area
“I Have Cancer, But Cancer Doesn’t Have Me”
Thelma Jones – White House Champion of Change
Breast Cancer Symptoms and Diagnosis – BreastCancer.org
Thelma Jones Brings Breast Cancer Awareness Support to Neighborhood
The American Cancer Society Relay For Life
Thelma Jones, Community Activist and Advocate
]]>The first topic covered the components of Complete Decongestive Therapy (CDT), which is the most common non-invasive lymphedema treatment. CDT is the first thing that the National Lymphedema Network recommends. Overall, a lot of people found CDT to be effective but difficult. Nicole Stout noted that using compression garments and taking good care of yourself can reduce the number of sessions needed. “CDT has many components and requires intervention from a skilled therapist. After treatment, patients keep up with CDT on their own,” she added. Complete Decongestive Therapy has four components: Manual Lymph Drainage (MLD), compression bandaging, skin care and exercise.
Manual Lymph Drainage is a big part of lymphedema care. It is very time consuming, but can make patients feel a lot better. Depending on the patient, some do their MLD routinely, others use pumps at home, and some don’t practice MLD at all. Using compression garments and pump therapy are very beneficial, as well as practicing deep breathing to help stimulate the lymphatic system. Check out this video on manual lymphatic drainage for more information. Remember to stay hydrated before and after MLD to avoid feeling sick or tired.
There are a lot of compression options you can use to manage lymphedema, including elastic/day garments, bandages and bandage alternatives. One #LymphChat participant shared that a custom Juzo armsleeve and glove work well during the day, and wears the JoViPak armsleeve at night. Compression armsleeves help to prevent and treat lymphedema in the arm, but brands like Juzo, JoViPak, and Solaris offer compression garments to treat lymphedema in other body parts – including the legs and trunk area. lebontadipio offers tons of brands, colors and compression levels to choose from so you can find the perfect garment for you.
Skin care is also extremely important for Complete Decongestive Therapy and preventing infections. You can also wear silver liners, or compression stockings that are made with silver to fight off bacteria and prevent infections. During the day, you can use Medi Day Gel to moisturize your skin. Apply it before you put on your compression garment to make it easier to don. Don’t worry, this gel will not damage your garments like other lotions may. Some moisturizers break down the material due to the lycra in the garment and reduce its effectiveness and breathability, so make sure you use a garment-friendly gel! Medi Day Gel quickly absorbs into your skin to avoid sticky or greasy residue. At night, you can sooth your legs with Medi Night Creme. It also helps to treat venous insufficiency.
The last component of CDT is exercising, which helps to stimulate the lymphatic system. Lymphedema patient, Amy Santiago says that opening up the Lymph channels (neck/collar, armpits, stomach and breathing) help her before starting cardio or training. One way to open up these channels before exercising is with Manual Lymphatic Drainage (MLD). Swimming, yoga and snowshoeing are all great exercises for lymphedema patients.
Towards the end of the #LymphChat, participants discussed surgical treatments for Lymphedema. According to Dr. Jay Granzow, Suction-Assisted Protein Lipectomy (SAPL), Lymphatic Venous Anastomosis (LVA) and Vascularized Lymph Node Transfer (VLNT) are the most effective lymphedema surgeries. SAPL greatly reduces excess volume in chronic lymphedema patients, and is generally performed in later cases when solids accumulate in the leg or arm. Frequently after SAPL, the use of a compression garment allows you to significantly cut down on CDT, or eliminates the need for it altogether. Other patients, usually in the earlier stages of lymphedema, undergo LVA and VLNT due to excess fluid buildup. You can also combine VLNT and LVA after healing from SAPL to treat solid and fluid components. Compression therapy after these procedures are vital.
Dr. Jay Granzow believes that depending on the patient, each type of surgery can be a success, based on the stage they’re in. As Nicole pointed out, “not just any surgeon can perform these surgeries. Special expertise is needed.” There is a limited number of surgeons that are trained in lymphedema surgery. Although most of Dr. Jay Granzow’s patients have had their surgeries covered by insurance, it depends on your insurance plan. To determine if you qualify for surgery, see a surgeon that specializes in these treatments for an evaluation, as well as a lymphedema therapist to figure out what the best treatment options are for you. Click here for more information on SAPL, VLNT and LVA procedures.
On the first Tuesday of every month, the National Lymphedema Network will continue to host a Twitter Chat, so make sure you follow them on Twitter at @lymphnet and include #lymphchat in your tweets to participate! If you think of any other questions that you would like to ask, email [email protected]. The next Twitter Chat will be on Tuesday, May 5th, 2015 about lymphedema and exercise. Don’t miss it!
Additional Resources
- Lymphedema Products
- Find Treatment Options In Your Area
- NLN Educational Videos
- Full transcript of the first #LymphChat
- Mark Goldstein’s Inspirational Story
- The 25th World Congress of Lymphology Conference
Chat with us on Twitter! #LymphChat
lebontadipio | Nicole Stout | Dr. Jay Granzow | National Lymphedema Network
]]>Britta Vander Linden writes an inspiring blog about her experience with lymphedema. She was diagnosed with primary lymphedema when she was 23 years old. Since then, she has juggled a demanding job and keeping up with her blog, Lymphedema Diary.com, in her spare time. She was inspired to start a blog to connect with others struggling with the same illness. Her blog serves as a network for her and her readers to support and comfort one another. “I felt it was time to share my experiences with others in an effort to try to make their life easier. I hoped to make Lymphedema Diary the resource I wish I had when I was first diagnosed.” Each month, thousands of readers spanning across over 100 countries read her blog. Check out her inspiring story and get tips on how to manage lymphedema.
Before she started Lymphedema Diary, Britta turned to local support groups for help, but they didn’t regularly meet and were located at inconvenient places. A lot of them were made up of breast cancer survivors, so she had a hard time connecting with them because she didn’t feel like they were going through the same thing. Once she got involved on social media, she was able to connect with people all around the world to share tips on anything from finding good therapists to lymphedema management.
Lymphedema Diary is full of compression tips in posts like, “A Leg Up: Compression Stocking Tips–What the Doctors Don’t Tell You.” Those with lymphedema use compression garments every day to manage their condition. Britta says, “No matter the difference in type or severity of lymphedema from one person to another, all of us are struggling to deal with compression garments. I think that’s why the series has been so popular.”
Britta has been a customer with us because we have all “Four P’s,” or what she refers to as the four key things every stocking dealer should have: people, price, perks and policies. Juzo Soft Pantyhose in 30-40mmHg is her go-to compression garment because of how soft the fabric is, and because they don’t look like compression tights. According to her, the fabric is very susceptible to snags, however. Britta also suggests the Juzo Dynamic Pantyhose for exercising because they are much more durable. The downside is that they aren’t as fashion-friendly as the Juzo Soft pantyhose, and the thickness of the fabric makes it harder to get the stockings off.
Some other things that Britta has found that help her to manage her lymphedema are regular exercise, getting a healthy amount of sleep, eating a low-sodium diet and staying hydrated. “If I don’t keep up on any one of these habits, I feel it in my legs. For exercise, I prefer swimming, yoga and anything that gets me lifting the legs up and down. In the winter, I enjoy snowshoeing.” She developed a few techniques that help keep her legs stay happy and healthy during a long day at work.
Check out Britta snowshoeing! This is one of her favorite ways to keep lymph fluid flowing in the winter.
When she was first diagnosed, she underwent six weeks of complete decongestive therapy (CDT). Although she is happy that she did this therapy on both of her legs, the process was exhausting. Between waking up early in the morning and the long commute before work, it wasn’t a good long-term solution. Overall, it was beneficial because she learned a lot about lymphedema care. One thing she doesn’t believe helped her was the acupuncture treatments she tried at about the same time.
There are hundreds of millions of people around the world who are suffering from lymphedema, but there is no cure. LE&RN has done an amazing job over the years in the advocacy, research and education of this condition. You can become a member for only $5 a month and help support the cause year-round. March is a very important month for spreading the word about lymphedema. Many doctors and patients do not know what symptoms to look for in the early stages of lymphedema. LE&RN is working to change this through education. Many people are not aware that the most common cause of lymphedema is cancer treatment. The removal of lymph nodes significantly increases your risk, but there are a couple of things that you can do after cancer treatment that can reduce your risk of lymphedema.
Thanks for reading!
While most people know Kathy Bates for her humorous or award-winning roles, many people don’t know that she is a two-time cancer survivor. A couple of years ago, she developed lymphedema in both of her arms after a double mastectomy. After going through nine rounds of chemotherapy and beating ovarian cancer, she was faced with adapting to life with lymphedema. Now her focus is to offer her support to other cancer survivors.
“Up to 10 million Americans and hundreds of millions worldwide suffer from lymphedema. It will occur in up to 50% of breast cancer survivors, and 100% of those with head and neck cancer.” – Lymphatic Network
Lymphedema is caused when your lymph nodes are taken out or damaged, usually when treating someone for cancer. This leads to the blockage of lymph fluid, which causes swelling in the arms, chest or legs. Lymph is the fluid responsible for discarding bacteria and bodily waste from tissues. Although there is no cure for lymphedema, there are ways to help manage it on a regular basis.
After her mastectomy, Kathy had a hard time adjusting to wearing prosthetic breasts and feeling tired and weak all of the time. It wasn’t easy for her to get the energy to get ready in the morning, so Kathy really appreciated the help of her makeup artist and hair dresser on set. The downside to being on set were costume fittings. It was hard to find something that didn’t restrict the flow of lymph under her arm. According to Kathy, the hardest part of all of it was when her TV show, Harry’s Law was cancelled; “The timing could not have been worse. When you have a network canceling your show because your viewers are too old, there’s nothing worse than a double mastectomy to slam the door on your sexual attractiveness. It was a double whammy.”
Luckily for Kathy, her lymphedema is mild, but she still goes to therapy and wears a compression sleeve to keep the swelling down. LympheDivas is a company that sells compression arm sleeves in a variety of colors and patterns to help breast cancer survivors to feel confident again. Instead of wearing medical looking attire, patients can dress fun and fashionable. These garments are made with moisture wicking fibers to keep your arm comfortable and dry all day. The fabric is also infused with aloe vera to keep your skin soft and smooth.
Now, Kathy is a celebrity spokeswoman for Lymphatic Education & Research Network (LE&RN). She kicked off the Face of Lymphedema Challenge at the fifth annual Walk for Lymphedema and Lymphatic Diseases this past September. The cool factor here is that not many celebrities share their experience with the world. Kathy Bates is one of the first Hollywood celebs to be out in the open with her condition.
Her advice to those recently diagnosed with cancer?
“It’s no picnic, but it’s not necessarily a death sentence either. Go through the initial panic, and when that dies down, focus. Listen to your doctors, and ask questions; the more you know, the better. But stay off the Internet at night worrying. Rest instead. Be good to yourself. Use your chemo time to visualize yourself becoming healthy, no matter how silly the fantasy may seem. The rest of the time, try not to dwell on cancer. You are not your cancer. It doesn’t define you. You can decide who you want to be. On the positive side, cancer can be a wake-up call. Take the opportunity to enjoy life and be a kinder person. You’re still at the party, so have a good time until last call.”
Read more about Coping Magazine’s article on Kathy Bates.
Kathy Bates never let cancer or lymphedema stop her. She has inspired tons of people with her story. For more information about lymphedema, Kathy Bates, or other resources, check out the links below. Thanks for reading!
Whether you’ve seen compression arm sleeves worn by professional athletes or by someone working out at the gym, it’s hard not to notice the amount of attention arm sleeves have been getting. We have been surrounded with sports stars like LeBron James, Robert Griffin III, Ray Allen, Kobe Bryant, Johnny Manziel, Allen Iverson, Dwyane Wade and many more who all famously wear compression garments. Although compression sleeves are usually used to treat medical problems or to help heal after an injury, arm sleeves can be worn regularly to help keep you energized by reducing muscle fatigue, improving circulation, increasing performance, providing protection from injury and can even reduce soreness as well.
With tons of pro athletes such as Robert Griffin III regularly using compression arm sleeves, they are starting to make a fashion statement. When asked why he wears an arm sleeve on his left hand (when he throws with his right), the quarterback claims that it’s not about functionality, it’s about feeling good. As more and more people demand to know why he always wears it, RGIII explains the rituals that him and other players have; “You see we [NFL players] do these things because they make us comfortable. Not to be different. Been wearing a sleeve and glove for 10 years.”
Like RGIII, Allen Iverson was introduced to compression arm sleeves because of an injury, but came to like them so much that he continued to wear them! And conveniently enough, it helped to cover up tattoos that are not allowed in the NBA. Clever right? Thanks to LympheDIVAs and LympheDudes, there are now tons of fun, eye-catching and unique patterns of compression arm sleeves and gloves to choose from. Now you can boost your confidence with fresh compression arm sleeves just like the pros.
Yes, arm sleeves can also keep you warm, but did you know that the Core-Sport Gradient Compression Arm Sleeve, along with a lot of other products sold on lebontadipio are antimicrobial to protect your body against bacteria and also helps to eliminate odors. The material the sleeves are made out of actually works to kill bacteria. If you have open wounds, recently had surgery or are more prone to infection, choose items that are antimicrobial or that contain silver in them. Silver is known to have medicinal properties that help speed up the healing process. BrightLife offers products with silver-coated fibers for both men and women.
So there you have it! Arm sleeves can help you recover and improve your performance, while making you look great at the same time. So what are you waiting for? Get shopping!
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Therapeutic compression sleeves, like stockings, have graduated compression, with the highest compression at the wrist that gradually decreases as it goes up the arm towards the axilla or armpit. If there is swelling in the wrist, hand, or fingers, a compression glove or gauntlet is worn in combination with the sleeve. There are even combination sleeves, that have a gauntlet knit-in. These eliminate the possibility of any overlap compression at the wrist. Most compression sleeves are seamless, having been knit in a circular fashion, woven on the same machines using the same nylon and spandex fibers as stockings.
Most compression sleeves have a top-band with dots of silicone on the inside. These grip the skin and keep the sleeve from sliding down during the day. Sleeves are also available with a shoulder strap to keep them in place, or “It Stays” body adhesive can be used with a plain knit top-band.
Sleeves come in 3 ready-to-wear compressions, 15-20, 20-30, and 30-40mmHg. The bigger the numbers, the greater the compression. If you’re wearing a sleeve as a preventative measure, and there aren’t any signs of lymphedema, your doctor will typically recommend 15-20mmHg or 20-30mmHg. If you already have lymphedema and are wearing a sleeve to control swelling, one of the higher compressions will most likely be prescribed.
In terms of fashion and comfort, compression sleeves have come a long way in the past 10 years. The color choices used to be beige and an uglier beige. Now there are companies that just make sleeves in prints and patterns. LympheDivas, a company founded by two young women fighting lymphedema as a result of breast cancer surgery, would not accept beige as the only option. They now turn out dozens of beautiful new patterns and prints every year. Juzo, another manufacturer of compression armsleeves, started their Dream Sleeve line about five years ago. Every Spring and Fall they introduce five new fashion-forward seasonal “Dream” colors that can be ordered as solids, or tie-dyed with a black or white background.
Athletes have recently embraced compression arm sleeves as a way to boost their performance. We are starting to see sportier styles for men as well as women. We expect that the variety of armsleeve options will continue to increase. lebontadipio will always be at the forefront offering you the latest in style and design with the assurance of true medical efficacy.
By: Pete@lebontadipio
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Before you begin shopping, you need to know what compression level is appropriate for your condition. If you already wear stockings, hopefully you know your compression. If this is is your first time, your doctor or therapist should have told you what compression level you need. If they have not, our compression guide can help, but this is not a substitution for medical advice. We highly recommend that you talk to your doctor or health care provider before beginning compression therapy above 20mmHg. 15-20 mmHg is the perfect starting level.
Once you’ve determined the proper compression, you need to decide on the style or length of the garment, that is, a knee high, thigh high or waist high (pantyhose). Remember the stocking has to cover the area of your body where the problem exists. If you have an aching varicose vein in your thigh, a knee high isn’t going to help. If you’re traveling and don’t have any existing venous problems, a knee high should do the job.
Now that you know the compression and style, the rest is easy. Picking the weave or fabric you prefer and deciding if you want an open or closed toe.
The three main fabric choices are sheer, opaque and ribbed. Sheers look great, but are just a bit more delicate than other fabrics. Opaques offer the widest range of prices and sizing options. Ribbed are very durable. All three fabrics are usually woven from nylon and spandex. Opaque and ribbed fabrics are available in cotton, wool, and silver blends.
The toe style does not affect the therapeutic benefit of a compression stocking, and is usually a personal preference. Open toes are great in warm weather, with sandals or flip-flops and if you have problems like corns or hammer toes.
Now it’s time to shop. Let’s say you need a 20-30mmHg compression thigh high, and want a sheer fabric with a closed toe. Mouse over Compression Level in the navigation bar. Move your cursor to 20-30mmHg, then click Thigh Highs. A page will open with all of our Thigh Highs in a 20-30 mmHg level. You can than filter down to the style you want. Select Sheer in the left hand filter, and then Closed Toe. Now let’s look for a 15-20mmHg compression knee high in cotton with an open toe. Mouse over Compression Level, move your cursor to 15-20mmHg, then click Knee High. You will then use the filters on the left hand to select Open Toe and Cotton.
As mentioned in the first paragraph, there are many different ways to search our website for the compression garment you need.
If you have a question or need assistance finding what you want, our trained certified fitters are happy to help at (+31)262843975.
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