Testimonials

Dear Mr. Westbrook,

I don't think that "thank you" expresses the amount of appreciation I have. I am a recipient of the Marilyn Westbrook fund for my compression garments. I have quite a few chronic health problems - one of them being lymphedema. About a year and a half ago, I was diagnosed with a rare disease called Dercum's disease, which has caused lymphedema in moderate amounts in my legs and stomach, and minor in my arms. I have a durable medical equipment cap - which I reach with my diabetic (type 1) supplies. I have to pay 100% for my compression stockings and without the grant, I was unable to get the proper garments. Living a life with many chronic health problems can sometimes leave me feeling hopeless and you helped bring hope back to my life. I am married with a seven year old boy and a four year old girl. I want to be able to play with them with less pain. You have helped me be a better mom. Your kindness has greatly impacted my life and more specifically my physical and emotional health

God bless you and thank you,

April Rabillard
Dear Mr. Westbrook,

I am writing this note to thank you from the bottom of my heart for the wonderful garments that I am now using to treat my Lymphedema.

They are so much easier to use, and more effective than traditional wrapping.

My life has become so much more enjoyable, and it is all because of the great work that your foundation is doing.

Keep up the good work. I know that your wife, Marilyn, would be very proud of you!

With much gratitude,

Elizabeth Kober
Dear Doyle and Saskia:

One of my patients is a recent recipient of your generous compression garment program. She received 2 thigh high Solaris@ Tribute garments that she could not afford to purchase on her own. Since her medical insurance is Medicare her garments are not covered.

Until receiving these garments, my patient's daughter was attempting to bandage her but was herself not in good enough physical shape to continue doing so. My patient has been in and out of the hospital a few times in the past year with life threatening cellulitis due to venous insufficiency wounds and lymphorrhea excoriating both of her legs and feet. She was not able to go anywhere because of the copious amounts of lymph fluid leaking out of her legs. Having her new Solaris@ Tributes has given her back her quality of life. From the bottom of my heart I can't thank you enough for such a tremendous gift. Doyle, the commitment you have made in honor of your wife's memory is a beautiful tribute and I feel especially touched that one of my deserving patients has been able to "live again" through your generous program.

Saskia, what can I say except that you are the "glue" that keeps our ever growing lymphedema community together and the facilitation of the Marilyn Westbrook Garment Program is just another great reason why the NLN is so very crucial to the survival of lymphedema programs all around the world.

Yours With Gratitude,
Mary Rosenberg, CLT-LANA
(on behalf of Barejouhi Kourkounian)
To: Doyle Westbrook and the NLN

I cannot express how many times since receiving my nighttime compression sleeve hat I have cried over it. It is because of the gratitude I feel for the National Lymphedema Network's and Marilyn Westbrook Garment Fund's understanding of what it is like to lose the ability and the financial means to take care of oneself.

Once I was asked by a medical professional why I "only" had Medicare and why I didn't plan ahead. I did.

In the span between 1998 and 2001 I had had five back surgeries. The costs were so astronomical I went through all my money, a $30,000 annuity, sold my car, and used credit cards for prescription drugs. The pain medications alone are over $375 for two prescriptions a month, so that I am able to dress myself and walk around. The costs from the stage three breast cancer surgery, chemotherapy, and radiation were also very high and 1 now have to worry about an additional $250 a month, for five years for cancer medication.

With the severe lymphedema problem that affects my left arm, hand, chest wall mass and breast mass I must always have compression garments on all day and all night, Since compression garments only last three to four months it can become extremely expensive to treat lymphedema, which makes it important that the NLN and the MW Garment Fund continue to help not only myself, but others. Thanks to these two organizations, and their donors I do not have to worry as much about the costs for the care of my lymphedema.

Again, thank you for your caring and understanding.

Dorothy C. Hansen
To Doyle Westbrook:

I can hardly find words to thank the Marilyn Westbrook Garment Fund and the National Lymphedema Network for their wonderful contributions to increasing lymphedema awareness, as well as the generous donation that was made on behalf of my needs for lymphedema garments. I have only begun to see the progress that medicine has made in its understanding of lymphedema; however, the field of study has the potential to make significant achievements in growth and awareness.

Your organization has @uly dedicated itself to lymphedema awareness and education, and because of this, you were able to help someone like myself who could not afford garments for management of my condition. I have been battling primary lymphedema since birth. It was only recently that I began to receive proper treatment for my condition. In the past I was told that the disease was not manageable. I received liposuction each year on my right leg and right arm and used a compression pump for the first 14 years of my life; Additionally, I wore compression garments that seemed to make the swelling worse. Throughout this period my family continued to pay out of pocket as insurance companies fought to say that the treatment was maintenance or for cosmetic reasons. Due to what I believe was a result of poor medical management and understanding, when I was fourteen I was hospitalized with a pleural effusion in both lungs which turned out to be chylous lymphatic fluid. I spent three months in the hospital being treated as nothing more than a guinea pig. From that point, management of my lymphedema was minimal with the fear that aggressive therapies would return the fluid to my lungs. The lymphedema also began to spread to my left upper and lower extremities during that period.

Currently, I am attending Columbia University to receive my Doctorate in Physical Therapy. Throughout my volunteer and work experiences, I have encountered many who face. similar uncertainties about the prevention and progression of their lymphedema. This summer I started a month long treatment at The Norton Clinic for Lymphedema in New Jersey and continue to make amazing gains with manual lymph drainage and complex decongestive therapy. It was only because of my faith and understanding in complex decongestive therapy that I decided to commit to life long management utilizing this form of treatment. I've lost about 3 112 liters in my right leg and almost a half a liter in my left arm. I feel absolutely great and only hope to continue to make gains. As a full time student at Columbia University, I was not able to afford proper Circaid compression garments for nighttime use. With the help of the National Lymphedema Network and Marilyn Westbrook Garment Fund, I will continue to make gains in managing my own condition, so that I can one day be a part of educating others who struggle to do the same.

I thank you for all of your kindness and hope that you continue to do what you do best. There are so many people out there that could use your help. I will continue to do my part as well. If there is anything I can do for your organization, whether it be as a patient or a soon to be physical therapist, I will gladly assist you in any way I can.

Thank you,

Dana DiMari
To: NLN, Doyle Westbrook

Words cannot express my gratitude for receiving the lymphedema sleeve through your foundation. It's wonderful that Marilyn Westbrook had the vision to create this foundation.

Gratefully yours,

Rita M. Silva
Dear Saskia R.J. Thiadens, R.N.,

Many thanks to you and the Marilyn Westbrook Garment Fund for the gift of a new set of Circaid Graduates below the Knee "moon" boots.

My only income is a small monthly social security check. With my medical bills from a recent nursing home stay I wouldn't have been able to puchase a new set to replace the older set I have been using. I really appreciate the gift from the Marilyn Westbrook Garment Fund.

May God bless.

Yours Truly,

William Burket
To The Marilyn Westbrook Foundation:

Thank you for giving me the opportunity to be a recipient of the Lymphedema Foundation. It will give me a chance for freedom and to wear the clothes and shoes I want and I won't be afraid of people staring at me in the community. I now can get in and out of the tub without falling because my balance has gotten so much better. I know these garments will help me with my medical problems because it will help prevent my legs from swelling.

I hope the Foundation gets more recognition so others like myself can benefit from their funds as well. Everyday life will get easier for me thanks to your generosity and give me a sense of freedom in my mobility.

Gratefully Yours,

Marian Santiago
Dear Marilyn Westbrook Fund,

Thank you so much for the help concerning our daughter Allyson Hannah. It is a joy in our tiny world to know that people exist with such open hearts, and insights.

We are spreading the word on the new treatments for Lymphedema. And our fondest thoughts are with you all daily.

Tom Hannah, Marianne L. Hannah
Spring 2009
To whom it may concern:

I want to thank you and the National Lymphedema Network, for you great generosity because you have collaborated to my wellbeing, by donating to me the Leg Garment. It's been over one month I've been using the garment, and it has made a great deal of good to my legs, I feel so much better in the mornings because I wear it at night, and what a difference it makes through the days. Since I've been using this garment the legs is much less swollen, the fluids is less, I feel lighter when I walk, and I am able to do my house chores much easier.

Thank you so much from the bottom of my heart, and I am so proud to be part of this organization, that makes a difference on people's lives, and it certainly made a difference in my and the way I feel. Thank you and may God bless you.

Sincerely Yours,

Maria R. Silva
Dear Mr. Westbrook, Ms. Thiadens:

Just wanted to let you know that Bekki has received the compression sleeve that your fund so kindly paid for. We feel that it arrived just in time as her old garments were not fitting tightly enough and were thoroughly worn out. Her arm volume had begun to increase at almost all measurements and she had to go back to bandaging at night. Hopefully, now with the better fitting garment, her arm will improve again.

A big thank you to the Marilyn Westbrook Garment Fund for helping Bekki and others like her. You are doing a wonderful work in the world.

Sincerely,
Karen Crippen (Bekki's mom)
Hi Saskia,

After our conversation the other day, I realized I never sent you, NLN, and the Westbrook Foundation my deepest thanks for providing my patient, Darlene Boland, with the funds to purchase her compression garment. As you know, her circumstances were quite dire and she would not have been able to afford this very essential component of her lymphedema care without your help. NLN and the foundation truly are lifesavers.

Sincerely,
Ronnie Gordon
William GRADUATED today! It was great. Everyone was tearful - happy tears. He has come such a long way. Here is his letter. I typed, he spoke. I wish I could put in the smile he had on when he was writing it. Thanks again, Tracey

Dear MWGF,
Today is my graduation from Wyatt Rehab. I have been coming every-day to every-3-days since October 2010. Today I am leaving in my Bia Care Leg Assists that were given to me by the Marilyn Westbrook Garment Fund. I would not be here if it wasn't for you. I am very grateful for your products and for giving me the chance to graduate. If I didn't have these garments, I would have humongous legs. I feel like I have made a huge accomplishment with these garments. They fit well. It took me a little time to practice putting them on but today I put them on without any help. Thank you for the scholarship and the achievement and the therapist.
Sincerely,
William Howard
A million thanks to the NLN for buying nighttime garments for me. A million thanks to Robin at the NLN for all the help and information that she gave me. She is truly and angel! A million thanks to Roberta Keenan at Lima Memorial Hospital in Lima, Ohio. She's the lymphedema therapist who measured me for the garments. A million thanks to the late Marilyn Westbrook, the very kind lady who inspired the garment fund. I deeply appreciate these garments and again, thanks a million!!!!

Judy Davis
To Whom It May Concern,

I wanted to write this letter to thank the National Lymphedema Network for all they have done to help me in my treatment of Lymphedema. Due to limited financial means at this time, I was unable to afford products that have been critical to my condition. Everyone at the National Lymphedema Network has been extremely helpful, courteous and professional. I am happy to support this organization and would recommend it highly.

Sincerely,

Peter Cafasso
To the Westbrook Fund:

Thank you so much for donating a CircAid to me. I've been waiting a long time for this and it is such a big help in my daily routine. Your fund is a blessing and I hope it will continue to help many people like myself.

Sincerely,

Allyson Hannah (16 years old, Primary Lymphedema)
Thank you so much for assisting my patient, Fay Kelley, with obtaining her CircAid products. She is such a kind woman and is so active with her self-care. She is very grateful to the NLN and the foundation.

Thanks again,

Amy Steinhoff and Fay Kelley
Robin Miller and member of NLN. I want to thank you so much for paying for my garment. I appreciate it so much for I have a hard time keeping up with expenses in my condition. If it wasn't for these stockings I wouldn't be able to walk. From the bottom of my heart I thank you. Sincerely, Sarah Corcoran
National Lymphedema Network,
Thank you so much! I appreciate all that you've done for me.
Respectfully Yours,
Kristina Georgoulakos
To whom it may concern:

I am writing to thank you so much for the garments that you purchased for my lymphedema. I believe that God sent you to me through my therapist.

My medical bills were already tremendous because of cellulitis, ultrasounds, medicine and doctor visits. I was confined to bed rest with leg elevation. I knew I needed therapy immediately, but I figured it was a lot cause because after two months of leg elevation, my leg calf had not gone down any - not even one inch.

When my therapist mentioned that I would need garments and told me how much the garments cost, I almost fell off the table. I began to worry so much that I couldn't sleep at night.

Then a miracle happened! My therapist heard of the National Lymphedema Networks Marilyn Westbrook Garment Fund and told me that the Fund may be able to help me purchase garments. I was very skeptical when we applied. Well, to my surprise, the Marilyn Westbrook Fund came through. I could not believe there was such a place like this Fund that would help me with my garments. My prayers were answered.

I cannot thank you enough for helping me become more mobile. With the garments purchased for me by the Westbrook Fund, I look forward to putting my garments on every day. Hallelujah, I have been set free.

Thank you so very much for believing in me, purchasing my garments, and for being there for me. I can never thank you enough. My family and I will always be grateful!

Sincerely,
Esther Glenn
National Lymphedema Network,
There are not enough words to express the sincere gratitude I feel for the grant awarded me this year by the Marilyn Westbrook Garment Fund. They afforded me the opportunity for the first time in the twelve years that I have had lymphedema, to wear custom made garments. The CircAids that I was granted has made my life so much easier. The stress in spending hours weapping my legs each night is gone. The ease in donning the CircAids is a godsend.
I not only wear them at night, but I wear them during the day especially if I work out in the garden, taking a quick trip to the grocery store and doing chores around the house. My mental attitude is improving in that I feel greater independence and not having to rely on family.
If it were not for the kindness of the Marilyn Westbrook Grant and National Lymphedema Network, where I first read of the grant, I doubt that I would have been able to get better results in controlling my lymphedema.
A deep gratitude to you from me and my daughters who have been my rock for these many years.

Thanking you with all my heart,
Eleanor
Dear Mr. Westbrook and Ms. Thiadens,
This week I received my custom fit compression garment funded by the Marilyn Westbrook Foundation. Thank you for your generous gift. I am finding the Tribute garment, made by Solaris, to be extremely comfortable. Even in our current heat wave, I am able to sleep through the night wearing the garment. And, I must say, I don't miss the nightly wrapping routine. Although my thoughtful husband has not mentioned this, I am sure I speak for him too.

I have already noticed a reduction in my arm! As you can imagine, I am very encouraged. We are keeping track of my measurements and look forward to being able to keep my lymphedema under control with this sleeve and self care.

Also, my comfort level has greatly improved. This means a lot to me as I am able to continue to enjoy my gardening, teaching my jewelry classes, and weaving. I look forward to a healthier and more active style of living.

I was unaware of the National Lymphedema Network until recently. I am finding the NLN LymphLink website to be very informative and helpful and have shared the information about NLN to others in my support group. Another person quite interested was my medical oncologist. He was unaware of the Tribute compression sleeve and it's benefits. I have scheduled a "show and tell" appointment with him so that he will be able to help other women with lymphedema due to breast cancer treatments.

Thank you so much for this gift of hope, health, and encouragement.

Sincerely,
Barbara
I received a free garment earlier this year and I was very thankful because I needed one to control the swelling in my legs and I am retired and on a limited income. I was unsure of what to do because I really needed two sets of garments (one for day and one for evening) but with the help of the NLN I was able to get one of the sets. It helped reduce my stress due to worrying about my health. It's really important to have this resource available to people and I wish it was more known that this fund exists.
--
Sandy J
National Lymphedema Network,
I would like to thank you so much for the CircAid garment that was donated to me free of charge. I have had lymphedema for ten years, as I am a survivor of breast cancer.
When I first developed lymphedema it was at the end of my Chemo treatments and I really couldn't bear any more physical problems. This swelling in my left arm persisted to plague me. I moved back home to New York after radiation and sought treatment for my growing arm. When the first physical therapist told me I was going to have to wrap my arm every night and that this was not going away, I was furious. I did not wrap my arm out of spite (to myself) well needless to say, I wound up in severe pain with a ballooning arm and then was hospitalized for cellulitis.
As I surrendered to this condition I had to start slow and work my way up in order to heal. I began wrapping my arm every single night and wearing a compression garment (sleeve & glove) during the day. This was quite an adjustment for me as I found these garments ugly in style and a total eye sore! People stared at me and always asked if I was in a fire. Children most always stared at me and I began to feel like a freak. Then an old high school friend told me to wear these compression garments as my armor, not to alienate myself from others or from life. Little did she know, her words helped me to persevere.
I have wrapped my arm for ten years straight staying up late (on holidays) taking the time for myself that is needed to take good care of myself. My therapist now is proud of me because I always take the time out to roll and wrap my ever swelling arm. My therapist told me about National Lymphedema Network, how it will supply a garment to wear overnight so I do not have to roll and wrap my arm every night, I was surprised. I am so used to rolling and wrapping my arm every night it has become a ritual.
Making this easier for me is a blessing, I am a single parent and struggle with the cost of garments; as they are very expensive and my medical insurance does not cover this, even though the only reason I have medical insurance is because of this illness or condition. Go figure? I am so very grateful for this effortless garment that was just given to me. The CircAid is an immense help to me. I don't even know if thank you is enough! The expense is great for this garment and now you're alleviated that for me. I am truly grateful for your generosity.

Respectfully yours,
Kristina
To whom it may concern, I want to THANK NLN very, very much. The sleeve and hand garments feel great to wear. I forget they are on my arm and hand until I start to use water. The night wrap is very comfortable at night also.

I don't know what I would do without people like you. I could never afford the things I need to keep the swelling down and be so comfortable.

Thanks a million and God bless all of you.
Dear Madam/Sir,
I am very grateful for your gift of arm and hand garments. Prior to receiving them I could not participate in PT sessions since my garments were too worn and I had sewn seams on them because they had stretched from 4 years of use.

Thanks again for your assistance.
Yours Truly,
Veronica