Courtney Day

Courtney Day

One of the special treats of these Lymphedema groups is that you get the opportunity to meet new people.

This past week, I had the most delightful time meeting a lovely young lady with Lymphedema. Her name is Courtney day, a fourteen year old high school student and co-author of a new book where she shares her journey so far with LE.

I bought a copy and read it when I got back to the hotel and it was delightful. I think you’ll find it refreshing to read as she is so open and honest about her struggles in ways that we as adults are too timid to do. It is very encouraging as well as she is unashamed of her faith and shares that as well and how she is determined not to let lmphedema ruin or control her life – or to let it rob her of her dreams and hopes for the future.

In addition to her school activities, Courtney is active in her church, the National Charity League (helps organizations such as the Rnald McDonald House and the Drake house. She is also involved with a local food help group Norcross Food Co-0p..

She and her co-author, LE therapist Emily Smith also have a Facaebook group:

Emily is a Vodder trained and certified therapist and has also written a couple books on Stretch Therapy.

A Leg Up on Lymphedema - Facebook group

The book is:

A Leg up on Lymphedema

And can be ordered through this link: A Leg up on Lymphedema

Enjoy!

Pat

Baby Kayden in Oklahoma

Baby Kayden in Oklahoma

Good Morning Everyone

I wanted to bring this to everyone’s attention and encourage anyone who can to help this little baby. Kayden has vascular Lymphedema and was just born on August 18, 2009…he’s got a long road ahead of him so let’s do anything we can for him and his family:

Baby Kayden

He’s a real little doll too!

Thanks Everyone!!!!!!!!!!!!!!!!!!!!

Pat

12th State of Georgia Lymphedema Awareness Day

12th State of Georgia Lymphedema Awareness Program

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Lighthouse Lymphedema Network

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THERE IS STILL TIME TO GET THOSE REGISTRATIONS IN

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An educational and awareness conference for patients, caregivers and professionals!

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Where?

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Saint Joseph Hospital Auditorium 5665 Peachtree Dunwoody Road, NE Atlanta, GA 30342

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When?

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Saturday, October 24, 2009 7:30 am - 5:00 pm

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Click here for Registration Form

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Schedule

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7:30-8:15am Registration – Continental Breakfast – Exhibits 8:15-8:30am Welcome .

Plenary Session:

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8:30-10:00am Moderator: Elaine Gunter, MT (ASCP)

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Nicole Stout, PT, MPT, CLT-LANA Will discuss her studies on early intervention for breast cancer including the anatomy, reconstruction, breast cancer surgeries, truncal and other upper extremity lymphedema

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10:00-10:30am Break Exhibits

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10:30-12:00 Charles McGarvey, PT, DPT, MS, FAPTA

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Lymphedema Secondary to Pelvic Cancer Treatment: A Review of Literature and Clinical Practice

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12:00 – 1:30pm Lunch Exhibits

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1:00-2:15pm Teen (only) Networking -Parent Networking (parents of children with lymphedema)

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Separate sessions

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Plenary Session:

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1:30-2:15pm Daniel Beless, MD, Director of Wound Care at Saint Joseph Hospital Wound Care and the lymphedema patient

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2:15-3:00pm DeCourcy Squire, PT, CLT-LANA

Research updates from the International Society of Lymphology of Lymphedema Diagnosis and Treatment

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3:00-3:30pm Break Exhibits

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3:30-4:30pm Panel Discussion

All speakers will participate in this question and answer discussion

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4:30-5:00pm Closing Remarks

New Lymphedema Treatment Clinic - Myrtle beach, South Carolina

It gives me great pleasure to announce a new lymphedema treatment clinic in the Myrtle Beach, South Carolina area:

Tom Kincheloe, OTR/L, CLT
Founder/Clinical Director
RIVERTOWN LYMPHEDEMA CLINIC AND REHAB, LLC.
100 Prather Park Drive, Suite A
Myrtle Beach, SC 29588-7910
Bus. Phone: (843) 742-5701
Bus. Fax: (843) 742-5704
Cell: (843) 957-2422
Email: erivertownlymph@sc.rr.com

I know Tom personally and two things strike me about him.

First, is his real concern/compassion for his patients.

Secondly is his knowledge of lymphedema.

A winning combination! So if you live in his area and are looking for lymphedema help, give him a call.

Pat

Angiosarcoma consecutive to chronic lymphoedema: a Stewart-Treves syndrome

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Lymphangiosarcoma referred to as angiosarcoma or Stewart Treves Syndrome is a possible complication

of long term (chronic) lymphedema. It has always been reported as rare, but ironically in the groups I participate in there

have been several members over the last couple years that have come down with it.

Historically, it was though that this mostly effected breast cancer survivors, but now is being recognized as something

that is possible for all chronic LE patients. Indeed, every one of the members who got it were not breast cancer patients.

A couple had other types of cancer and another two were primary lymphedema.

Also, it needs to be mentioned that in every case our members had bruises that didn't heal. When they were biopsied, it

turned out to be lymphangiosarcoma. it is critical that we keep check on our limbs that are effected and don't assume

any change is simply a discoloration cause by the LE.

In my own case, I had a small perfectly round spot on the calf of my left leg. It continued to grow until it reached

the size of a quarter. For me, it turned out to be mixed b-cell lymphoma.

So pay attention and report to your doctor when these spots arise.

Pat

Angiosarcoma consecutive to chronic lymphoedema: a Stewart-Treves syndrome

Rev Med Liege. 2009 Jul-Aug

Gonne E, Collignon J, Kurth W, Thiry A, Henry F, Jerusalem G, Gennigens C.

Université de Liège, Belgique.

The Stewart-Treves Syndrome is defined as an angiosarcoma (very aggressive malignant tumor originating from endothelial cells) appearing in a specific clinical setting. This tumor develops in patients suffering from chronic lymphedema of the upper limb following mastectomy and axillary lymph node dissection for breast cancer. The diagnosis relies on medical history, clinical examination and a histological assesment (biopsy or resection). This syndrome represents a rare clinical entity. Unfortunately, the prognosis is poor. A large surgical resection is the treatment of choice if the patient is a candidate for a surgical resection with a curative intent Radiotherapy is sometimes used as a palliative local treatment. Chemotherapy is only used in more advanced cases, not curable by surgery alone.

Pub Med

For further information, please refer to our pages:

LYMPHANGIOSARCOMA

and

Stewart Treves Syndrome

Lighthouse Lymphedema Network

I wanted to make a special announcement that the Lighthouse Lymphedema.Network is now on Facebook.

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You can join by going to:

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Lighthouse Facebook

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There is also an area where you can post and participate. AND - don't forget our upcoming program in October.

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We will be having both a parenting network and a teen network this year....be there or be square!

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see the details for that at:

Lighthouse Lymphedema Network

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**yes, I'm on it too :-)

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Pat

The CEAP-L classification for lymphedemas of the limbs: the Italian experience.

The CEAP-L classification for lymphedemas of the limbs: the Italian experience.
Int Angiol. 2009 Aug

Gasbarro V, Michelini S, Antignani PL, Tsolaki E, Ricci M, Allegra C.
Unit of Vascular and Endovascular Surgery, Department of Surgical, Anesthesiological and Radiological Sciences, Sant'Anna University Hospital, University of Ferrara, Ferrara, Italy allegra@mclink.it.

AIM: A method to classificate lymphedema has been needed to gather all the important information on the clinical evolution of the disease using a common language and an easy clinical applicability.

METHODS: The proposal for a new classification of the limb lymphedema was inspired by the C.E.A.P. classification for chronic venous insufficiency of the lower limb. The classification adopts the acronym C.E.A.P. by adding the letter L to underline the aspect ''lymphedema'' and is based on clinical data such as extension of lymphedema, presence of lymphangitis, leg ulcers and loss of functionality of the limb and instrumental criteria that permit to confirm and precise diagnosis. The Clinical classification is based on the most objective sign in these patients, the edema which is subdivided into 5 classes depending on the clinical manifestations. The etiological aspect considers 2 types of alterations of the lymphatic system: congenital and acquired. The anatomic is aimed to locate the anatomical structures involved. Pathophysiological conditions are gathered into 5 groups: agenesia or hypoplasia, hyperplasia, reflux, overload, obstruction.

RESULTS: The classification has already been appraised after 4 years of activity at the unit of Vascular and Endovascular Surgery of Ferrara, at the S. Giovanni Battista Hospital in Rome, at the Umberto I Ancona Hospital and at the S. Giovanni- Addolorata Hospital in Rome.

CONCLUSIONS: The proposal for a new classification of lymphedema C.E.A.P. L was developed in order to categorize patients with definite and objective marks, creating clinical reports with a common vocabulary, clear to all clinicians, permitting to stage the disease, evaluate treatment and finally obtain epidemiological and statistical data.

PubMed

Adverse effects of compression in treatment of limb lymphedema.]

Adverse effects of compression in treatment of limb lymphedema.

J Mal Vasc. 2009 Aug 18

Vignes S, Arrault M.

Unité de lymphologie, centre national de référence des maladies vasculaires rares, hôpital Cognacq-Jay, 15, rue Eugène-Millon, 75015 Paris, France.

INTRODUCTION: Limb lymphedema, whether primary or secondary, is a chronic disease. Compression is the cornerstone of therapy and includes multilayer low-stretch bandages and elastic garments. Compression is usually well-tolerated. The aim of our study was to identify all the different types of adverse effects of compression.

MATERIALS AND METHODS: Since January 2005, we have recorded all adverse events occurring in outpatients and inpatients consulting in a single lymphology department, spontaneously reported by patient during consultations or physical examinations, and noted the type of compression material used.

RESULTS: Adverse effects were secondary to poor choice of therapeutic material, excessive pressure or contact dermatitis. For the arms, an elastic garment stopping at the wrist can be responsible for lymphedema of the hand and fingers. Rubbing of sleeve seams may cause pain and even ulcers between the thumb and forefinger. Open-toed elastic stockings may exacerbate digital lymphedema, leading to the formation of oozing lymph vesicles. Hyperpressure may cause severe pain localized to the first and fifth toes, overlapping toes, interdigital corns and/or ingrown toenails. Silicone-banded soft-fit elastic garments may cause painful phlyctena, urticaria or eczematiform lesions. Elastic bandages may induce pain or purpuric lesions.

CONCLUSION: Compression can be responsible for adverse effects, sometimes severe, requiring treatment change or withdrawal. Further studies are needed to precisely determine their frequency to improve prescriptions and currently available products.

EMConsulte