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

Stocking donners and doffers are excellent accessories, but let’s take a look at the items outside of that category that our customers love.

First is the It Stays Body Adhesive, a gentle roll-on body adhesive that takes the place of a garter belt or silicone band to keep your stockings and sleeves in place all day. You simply roll it on to skin and press the article in place.It Stays washes off with water and is pliable so it moves with your skin. Fun fact: It Stays is the number one choice for beauty pageant contestants to keep swimsuit bottoms in place during judging. The uses go beyond pageants and compression garments, it can be used for shoulder straps, bra straps, wigs, toupees, theatrical make-up devices and more!

Customer reviews are plentiful and positive. One reviewer wrote:

“It's wonderful. I wear super support hose and with your product they last much longer and stay up much better. Thank you.”

Next is the Compression Assist Donning Aide, since this isn’t a traditional donning tool and it does so much more, I’m mentioning it here. This hypoallergenic spray does make getting your compression stockings on a breeze, but it also allows you to easily adjust and remove your stockings, it reduces wrinkling/creasing and increases wearing comfort.

Another fan favorite is ALPS Fitting Lotion. This lotion helps your stockings glide on but has an added bonus, it protects sensitive skin, makes dry skin feel silky smooth and it helps prevent garments from snagging. It’s made from 100% silicone and contains no perfumes or dyes. Additionally, it isn’t just for compression, it is used with prosthetic's as well.

Customers have said:

“For anyone wearing compression stockings-this is a God sent product. It makes putting the garments on much easier”

“Use with leg prosthesis. By using lotion prior to putting on leg prosthesis-insures comfort. Highly recommend”

Wearing compression garments on a regular basis can really dry out your skin, making legs and arms flaky and itchy. Using regular lotions can make it difficult to put your compression garments on and can reduce the lifespan of the fabric. lebontadipio offers a selection of compression-friendly lotions and creams that keep your skin soft and smooth and won’t harm your compression stockings or sleeves. Lymphoderm Body Lotion is an all natural, pH balancing lotion that softens skin, soothes irritation and is ideal for those with lymphedema.

Take a look at the full selection of skin care products offered by lebontadipio.

If you wear bandages regularly, the EZ-Roller Bandage Roller is for you. This product makes it easy to quickly re-roll elastic and non-elastic bandages, while being lightweight and portable. The tension can be easily adjusted, it works with any size bandage, and the handle can be switched to accommodate right or left handed users. The Lohmann & Rauscher Bandage Roller is very easy to use and is great for those who regularly wash and re-use bandages. It comes with a bracket for mounting on any flat surface, when not in use it can be taken out of the bracket holder and stored for next time.

If you prefer to wash your compression hosiery and other delicates in the washing machine, the Juzo Laundry Bag is perfect for you. Using a laundry bag is an inexpensive way to prevent snags, tangling and stretching. The flow-thru mesh bag lets water circulate freely for through cleaning. A zipper pull pocket prevents the zipper pull from catching on other items in the wash. This product has abundant reviews from happy customers.

lebontadipio offers a range of accessories designed to put it on, hold it up, take it off, wash it and more. We’re sure you will find something to make your life easier and better. Let us know in the comments which of our accessories is your favorite. If you need help finding the right one for you, our friendly and knowledgeable customer service representatives are here to help.

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.

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