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Herantis Pharma’s clinical study with Lymfactin advances to high dose level

Herantis Pharma’s clinical study with Lymfactin advances to high dose level

Herantis Pharma Plc
Company release 6 March 2017 at 10:00 am

Herantis Pharma Plc’s (“Herantis”) clinical study with the company’s innovative gene therapy investigational product Lymfactin® for the treatment of secondary lymphedema has advanced to highest planned dose level owing to good reported safety. A Data Monitoring Committee of independent experts recommended proceeding to high dose treatments after assessing safety data on the previously treated patients. Following the recommendation, the first high dose treatment has already been administered.

 “We are naturally very happy for the safety of Lymfactin® in the first treatments”, comments Pekka Simula, Herantis’ CEO. “This is the first clinical study in the world to apply gene therapy for repairing damages of the lymphatic system. Safety of the patients is our #1 priority so we want to move ahead carefully. We are thrilled to announce this milestone by coincidence on March 6: World Lymphedema Day!”

“Collaboration with the participating university hospitals in this study has been excellent”, adds Katarina Jääskeläinen, Herantis’ Project Manager for the clinical study. “Secondary lymphedema is a disfiguring, disabling disease that severely impacts the quality of life of patients. We hope our Lymfactin® will significantly improve the quality of life of patients in the future.”

The Phase 1 clinical study continues recruiting patients with breast cancer associated lymphedema at three university hospitals in Finland: In Helsinki, Tampere, and Turku. The study intends to recruit at most 18 patients by the end of 2017.

World Lymphedema Day

March 6 was officially recognized World Lymphedema Day since 2015 by e.g. the U.S. Senate. It is celebrated around the world largely thanks to the patient advocacy group Lymphatic Education & Research Network (LE&RN) to increase lymphedema awareness.

About breast-cancer associated lymphedema

Approximately 20% of breast cancer patients who undergo axillary lymph node dissection develop secondary lymphedema, a chronic, progressive, disabling and disfiguring disease that severely affects quality of life. Symptoms include a chronic swelling of an upper limb, thickening and hardening of skin, loss of mobility and flexibility, pain, and susceptibility to secondary infections. Secondary lymphedema is currently treated with compression garments, special massage, and exercises. While these therapies may relief the symptoms in some patients they do not cure lymphedema, which is caused by damage to the lymphatic system. There are currently no approved medicines for the treatment of this condition.

About Lymfactin®

Lymfactin® is a gene therapy expressing the growth factor VEGF-C specific to the development of lymphatic vessels. Based on preclinical studies Lymfactin® triggers the growth of new functional lymphatic vasculature in the damaged area and thus repairs the underlying cause of secondary lymphedema. Lymfactin®, patented by Herantis, is based on the internationally renowned scientific research of academy professor Kari Alitalo and his research group, a national centre of excellence at the University of Helsinki. Herantis also holds patents for a combination therapy, which may expand the use of Lymfactin® in other lymphedemas. See our introductory video on Lymfactin®:

About Herantis Pharma Plc

Herantis Pharma Plc is an innovative drug development company focused on regenerative medicine and unmet clinical needs. Our first-in-class assets are based on globally leading scientific research in their fields: CDNF for disease modification in neurodegenerative diseases, primarily Parkinson’s and ALS; and Lymfactin® for breast cancer associated lymphedema, with potential also in primary lymphedema. The shares of Herantis are listed on the First North Finland marketplace run by Nasdaq Helsinki Ltd.


Nasdaq Helsinki
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LE&RN Symposium Real-time Visualization of Lymph Movement

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Thanks for all the fantastic work you are doing Lymphatic Education & Research Network !

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Primäre Lymphödeme-Hereditary Lymphedema – NORD (National Organization for Rare Disorders)

Quelle: Hereditary Lymphedema – NORD (National Organization for Rare Disorders)

Hereditary Lymphedema

NORD gratefully acknowledges Joseph L. Feldman, MD, Senior Clinician Educator, Pritzker School of Medicine University of Chicago; Director, Lymphedema Treatment Center, NorthShore University Health System, for assistance in the preparation of this report.

Synonyms of Hereditary Lymphedema

  • primary lymphedema

Subdivisions of Hereditary Lymphedema

  • congenital hereditary lymphedema
  • hereditary lymphedema, type I
  • lymphedema-distichiasis
  • lymphedema praecox
  • lymphedema tarda
  • Milroy disease
  • Nonne-Milroy disease

General Discussion

Hereditary lymphedema is a genetic developmental disorder affecting the lymphatic system. It is characterized by swelling (edema) of certain parts of the body. The lymphatic system is a circulatory network of vessels, ducts, and nodes that filter and distribute certain protein-rich fluid (lymph) and blood cells throughout the body. In hereditary lymphedema, lymphatic fluid collects in the subcutaneous tissues under the epidermis due to obstruction, malformation, or underdevelopment (hypoplasia) of various lymphatic vessels. There are three forms of hereditary lymphedema: congenital hereditary lymphedema or Milroy disease; lymphedema praecox or Meige disease; and lymphedema tarda. Symptoms include swelling (lymphedema) and thickening and hardening of the skin in affected areas. In most cases, hereditary lymphedema is inherited as an autosomal dominant trait. Lymphedema may be classified as primary or secondary. Hereditary lymphedema is also known as primary lymphedema. Secondary lymphedema occurs because of damage to the lymphatic system from surgery, radiation therapy, trauma or infection (e.g. filariasis). Lipedema is a symmetrical accumulation of subcutaneous fat, most often in the legs. Lipedema occurs almost exclusively in females. Tenderness and bruising are also common. Typically, the feet are not swollen and thickening of the skin of the toes (Stemmer’s sign).  Lipedema is frequently misdiagnosed as lymphedema.

Signs & Symptoms

The main symptom associated with hereditary lymphedema is swelling (edema) or puffiness in different parts of the body because of the accumulation of protein-rich fluid (lymph) in the soft layers of tissue under the epidermis (lymphedema). Swelling frequently occurs in one or both legs, but may also be present in the trunk, face, genitalia and arms. When lymphedema develops in the legs, swelling is usually most noticeable in the foot and ankle but may also be present in the calf and thigh.. In some cases, swelling may cause tightness, discomfort and unusual tingling sensations (paresthesias) in the affected areas. The affected area heals poorly even after minor trauma (e.g., cut or insect bite). The skin of the affected area may become abnormally dry, thickened or scaly skin (hyperkeratosis) resulting in a “woody” texture.

Hereditary lymphedema type IA (Milroy’s disease) is characterized by swelling (edema) that is present at or shortly after birth (congenital). In rare cases, edema may develop later in life. The legs are most often affected. The extent and location of edema varies greatly from case to case even among individuals in the same family. In some cases the genitals may also be affected. Additional complications sometimes associated with hereditary lymphedema type I include upslanting toenails, small warty growths on the affected areas (papillomatosis), abnormally large or prominent leg veins, and, in males, urethral abnormalities and the development of a fluid-filled sac along the spermatic cord of the scrotum (hydrocele).

Hereditary lymphedema type II (Meige disease, lymphedema praecox) develops around puberty or shortly thereafter in most individuals. This is the most common type of primary lymphedema. In addition to lymphedema of the legs, other areas of the body such as the arms, face and larynx may be affected. Some individuals may develop yellow nails.

Lymphedema tarda is defined as primary lymphedema occurring after the age of 35. The legs are most often affected, but the arms and other areas may be affected as well.

Hereditary lymphedema may progress and, in some cases, may improve over time. Obesity makes management of lymphedema more difficult. Affected individuals with lymphedema are at risk for developing infections including bacterial infection of the skin and underlying tissue (cellulitis) or infection of the lymphatic vessels (lymphangitis). These infections are characterized by areas of warm, painful and reddened skin. Red skin “streaks” may also develop in the infected area. Increased edema is common. A general feeling of ill health (malaise), fever, chills, and/or headaches may also occur. If left untreated, cellulitis can lead to septicemia, skin abscesses, areas of ulceration, and/or tissue damage (necrosis). Cellulitis is more common in males than females. Athlete’s foot (Tinea pedis) can cause cracks in the interdigital skin, bacterial invasion and cellulitis.

In rare cases of persistent lymphedema, additional complications may develop including fluid (e.g., chyle) accumulation body cavities such as the thorax (chylothorax) and abdomen (chylous ascities). Chyle is a fat-laden cloudy fluid that is absorbed during digestion by the lymphatic vessels located around the intestine. Chyle normally flows through lymphatic vessels into the upper chest (thoracic duct) and is then deposited into veins, where it mixes with blood. In some people with hereditary lymphedema, the lymphatic vessels may rupture or become blocked (obstructed), causing chyle to accumulate in the chest cavity (chylothorax). A patient with primary chylous ascites needs to be on a no-fat diet supplemented with medium chair triglycerides and vitamins. Addition of a diuretic such as Spironolactone has been reported to be a valuable adjunct to dietary control.

Affected individuals may also be at a greater risk than the general population for developing a malignancy at the affected site. These malignancies include angiosarcoma. Angiosarcomas are cancerous tumors that develop from blood or lymphatic vessels. They may occur in any area of the body. A specific type of angiosarcoma is known as lymphagiosarcoma, or Stewart-Treves syndrome. This cancerous tumor may rarely develop in longstanding cases of primary or secondary lymphedema. Angiosarcoma occurs in the lymphedematous extremity but can spread to the adjacent trunk and lungs.


Many researchers believe that hereditary lymphedema may result from changes (mutations) in one of the different disease genes (genetic heterogeneity). Most cases of hereditary lymphedema type IA and type II are inherited as autosomal dominant traits. Genetic diseases are determined by the combination of genes for a particular trait that are on the chromosomes received from the father and the mother. Dominant genetic disorders occur when only a single copy of an abnormal gene is necessary for the appearance of the disease. The abnormal gene can be inherited from either parent, or can be the result of a new mutation (gene change) in the affected individual. The risk of passing the abnormal gene from affected parent to offspring is 50 percent for each pregnancy regardless of the sex of the resulting child.

Investigators have determined that some cases of hereditary lymphedema type IA (Milroy’s disease) occur because of mutation in the FLT4 gene which encodes of the vascular endothelial growth factor receptor 3 (VEGFR-3) gene located on the long arm (q) on chromosome 5 (5q35.3). Chromosomes, which are present in the nucleus of human cells, carry the genetic information for each individual. Human body cells normally have 46 chromosomes. Pairs of human chromosomes are numbered from 1 through 22 and the sex chromosomes are designated X and Y. Males have one X and one Y chromosome and females have two X chromosomes. Each chromosome has a short arm designated “p” and a long arm designated “q”. Chromosomes are further sub-divided into many bands that are numbered. For example, “chromosome 5q35.3” refers to band 35.3 on the long arm of chromosome 5. The numbered bands specify the location of the thousands of genes that are present on each chromosome.

Investigators have determined that some cases of hereditary lymphedema type II (Meige disease) occur because of mutations of the ‘forkhead’ family transcription factor (FOXC2) gene located on the long arm (q) of chromosome 16 (16q24.3).

Affected Populations

Hereditary lymphedema affects females more often than males. The estimated prevalence of these disorders is 1 in 6,000 individuals within the general population. Hereditary lymphedema type II (Meige syndrome) is the most common form accounting for approximately 80 percent of cases. The prevalence of hereditary lymphedema type I (Milroy disease) is unknown. Approximately 200 cases have been reported in the medical literature.


The diagnosis of hereditary lymphedema may be confirmed by a thorough clinical evaluation and a variety of specialized imaging tests including lymphoscintigraphy, ultrasound, and magnetic resonance imaging (MRI). During lymphoscintigraphy, a radioactively labeled colloid substance is injected intradermally into either the hands or feet. The time required for the tracer to be transported from the point of injection to the regional lymph nodes is recorded. In congenital lymphedema, the tracer may move sluggishly or not move from the site of injection. During an ultrasound, reflected sound waves create an image of the developing fetus. An ultrasound is used to rule out other conditions. A Doppler ultrasound can evaluate venous conditions such as varicose veins and venous blood clots. An MRI uses a magnetic field and radio waves to produce cross-sectional images of particular organs and bodily tissues. An MRI is used to detect findings characteristic of hereditary lymphedema including swelling (edema), a mass surrounded by a sac containing lymph fluid (lymphocele), and the formation of fibrous tissue (fibrosis).

Standard Therapies


No gene therapy for hereditary lymphedema is currently available. There is no FDA approved medication to treat lymphedema. Lymphedema risk reduction practices should be followed to reduce complications such as infection and an increase in swelling. Treatment is aimed at reducing swelling and preventing infection. Complete decongestive therapy (CDT) is a form of treatment in which specialized manual techniques (manual lymph drainage) is combined with multilayered compression bandaging, meticulous skin care, exercise, and the use of well-fitted compression garments.. Decongestive and conditioning exercises are important components of CDT. Patients and their parents/caregivers should be counseled on the importance of adhering to lymphedema management recommendations to prevent progression the lymphedema. Antibiotics can be used to treat infections such as cellulitis or as a preventive (prophylactic) measure in individuals with recurrent infections. Athlete’s foot can be treated with antifungal topical medications.

Various surgical techniques have been used to treat individuals with hereditary lymphedema including the surgical joining of small lymphatic vessels to nearby small veins (microsurgical anastomosis) has had some limited success in people with lymphedema. The goal of this surgery is to reduce swelling by creating new pathways for lymphatic fluid flow and “rechanneling” this flow into the venous system. According to the medical literature, these therapies have had only limited effectiveness. Reducing operations are available to remove excess fibrotic tissue in cases of severe lymphedema. Continued use of compression garments is necessary after reducing surgery. Liposuction has not been found to be effective in primary lymphedema.

Individuals with hereditary lymphedema should avoid long periods of immobility with legs in a dependent position. Affected individuals should also take special care to avoid wounds in any affected area because of a reduced resistance to infection. Certain medications such as calcium channel blocking drugs and non-steroidal anti-inflammatory drugs may worsen swelling in the legs and the benefits and risks need to be discussed with the patient’s physician. Excessive salt intake can cause fluid retention.

Genetic counseling will benefit people with hereditary lymphedema and their families. Rehabilitation therapy may be necessary in cases where extreme lymphedema impairs daily activities.


Investigational Therapies

Information on current clinical trials is posted on the Internet at All studies receiving U.S. government funding, and some supported by private industry, are posted on this government web site.

For information about clinical trials being conducted at the NIH Clinical Center in Bethesda, MD, contact the NIH Patient Recruitment Office:

Tollfree: (800) 411-1222
TTY: (866) 411-1010

For information about clinical trials sponsored by private sources, contact:

For information about clinical trials conducted in Europe, contact:

Botanicals such as the Benzopyrones and Saponins (e.g., horse chestnut seed extract) as well as the trace element Selenium have been advocated by some as adjunctive treatments for lymphedema.

Benzopyrones, a group of substances such as coumarin, hydroxethylrutin and flavinoid derivatives, have been used for the treatment of individuals with hereditary lymphedema. These drugs breakdown proteins found in lymph and may stimulation lymph flow thereby reducing lymph accumulation and subsequent swelling. However, the effectiveness of such medications is unproven and under debate. Hepatotoxicity has been reports in up to 6% of the patients taking coumarin. More research is necessary to determine the long-term effectiveness and safety of benzopyrone therapy in individuals with hereditary lymphedema.

Occasionally, drugs that promote fluid mobilization (i.e., diuretics) have been used for people with lymphedema. These medications increase urinary output and may help to reduce swelling in some affected individuals. However, diuretics have not been proven successful in reducing the swelling in primary lymphedema but may be beneficial in patients with mixed origin edema, e.g., phlebolymphedema. The prolonged use of diuretics for the treatment of hereditary lymphedema should be carefully directed by a physician as these medications may have several long-term side effects.

Contact for additional information about hereditary lymphedema:

Joseph L. Feldman, MD
Senior Clinician Educator
Pritzker School of Medicine
University of Chicago
Director, Lymphedema Treatment Center
NorthShore University HealthSystem


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Understanding Lymphedema – Lymphedema & Wound Care Session – LE&RN -David Zawieja PhD

Einen super interessanten Beitrag! Herzlichen Dank für die Bereitstellung.

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Retinoic acid may significantly prevent lymphedema development, experimental model suggests

Using newly updated mouse models, researchers demonstrated the impactful preventive properties of 9-cis retinoic acid against lymphedema. Currently, there is no cure for lymphedema, a swelling of the extremities that most commonly occurs after treatment for cancer.

Quelle: Retinoic acid may significantly prevent lymphedema development, experimental model suggests


A study conducted at the Keck School of Medicine of the University of Southern California (USC) showed that 9-cis retinoic acid (alitretinoin) could significantly prevent postsurgical lymphedema. Furthermore, the experiments were conducted with updated, easily reproducible mouse models that more accurately simulated lymphedema development in humans. The National Institutes of Health-funded study was published in the Annals of Surgery.

Lymphedema occurs when damaged lymph nodes are unable to drain properly, causing swelling and tissue buildup. Lymphedema affects 140 million individuals globally, including 5 million people in the United States whose lymphedema is related to cancer-related lymphadenectomy. As surgical developments continue to increase cancer survival rates, the prevalence of lymphedema is expected to rise. And with no known cure for post-surgical lymphedema, lymph node dysfunction can negatively impact long-term quality of life.

“Physically, lymphedema is both uncomfortable and inconvenient,” said Alex Wong, MD, assistant professor of surgery at Keck School of Medicine and one of the co-corresponding authors of the study. “Some patients express frustration at things we take for granted, like getting dressed. And for many of them, the swollen and deformed extremity is an unwelcome reminder of the cancer they fought or are still fighting.”

To examine the effect of alitretinoin, the research team induced lymphedema by making a small incision in the hind legs of mice rather than the base of the tail, as previous studies had done. This updated model better simulated lymph node dysfunction in humans in that rodent tails are not subject to the effects of gravity to the same extent as human arms and legs. And more simply, humans do not have a tail.

“Developing a more effective model for lymphedema research is as much of an achievement from our research as illustrating the potential benefits of retinoic acid,” said Young-Kwon Hong, PhD, associate professor of surgery at Keck School of Medicine and co-corresponding author of the study. Hong previously illustrated the potential benefits of alitretinoin on preventing lymphedema in petri-dish models before developing the mouse model.

After the hind paw incisions were repaired, the mice were divided into two groups. One group received daily injections of 9-cis retinoic acid, while the other received a vehicle solution as a control. The mice treated with the retinoic acid experienced less postsurgical edema and significantly less paw lymphedema compared to the control group. Moreover, the mice treated with the retinoic acid had much faster lymphatic drainage and increased lymphatic vessel density.

“Lymphatic drainage and maintenance of the integrity of the lymphatic vessels are two key factors in preventing lymphedema,” Hong said. “9-cis retinoic acid’s ability to accomplish both makes it a promising treatment option.”

Alitretinoin is already approved by the Food and Drug Administration for the treatment of skin lesions in acquired immune deficiency syndrome-related Kaposi’s sarcoma and eczema. If further studies prove fruitful, Wong hopes to establish a clinical trial for alitretinoin as a preventive measure against lymphedema.

“Our immediate next step is to experiment with timing,” Wong said. “Currently, physicians watch and wait for lymphedema, but our study suggests that treatment at the time of surgery may be a more effective course.”

Story Source:

Materials provided by Keck Medicine of USC. Note: Content may be edited for style and length.

Journal Reference:

  1. Athanasios Bramos, David Perrault, Sara Yang, Eunson Jung, Young Kwon Hong, Alex K. Wong. Prevention of Postsurgical Lymphedema by 9-cis Retinoic Acid. Annals of Surgery, 2016; 264 (2): 353 DOI: 10.1097/SLA.0000000000001525


“LE” DAS NEUE INTERNATIONALE SCHLAGWORT – What’s in a Name – Putting LE Center Stage

Ein wunderbarer und anregender Artikel die alle betroffenen, Firmen, Vereine und Mediziner am Herzen liegen muss.  Ich habe mir die Mühe gemacht und das für den deutschsprachigem raum übersetzt. Die Übersetzung findet ihr unter dem originalen Artikel.


William Repicci  Executive Director at Lymphatic Education & Reseach Network (LE&RN) Veröffentlicht 8.Februar 2017

A woman called me recently. She had had lymphedema for a decade and exclaimed, “When I was first diagnosed with this disease, I talked to my husband, children and friends. They didn’t understand and couldn’t remember that my disease was called lymphedema. Lymphedema is now my private hell.”

This scenario gets played out thousands of times a day. Lymphedema is a combination of two words (“lymph” and “edema”) that most people will never utter once in their lifetimes. As a result, combining them only doubles the challenge of getting this word lodged in the public’s brain. This is true of many diseases, but it is also true that those diseases have established easy-to-remember acronyms.

We have AIDS, MS, ALS, PTSD, SARS, TBI, RA, HPV, and IBD to name a few. In fact, check out Wikipedia for disease and disorder acronyms and you will find hundreds. However, look under “L” and lymphedema is nowhere in sight. And yet, there is in fact an acronym for lymphedema that is sporadically used—“LE.”

Turn on your television and you are likely to hear how advertising giants deal with getting a new disease branded for the general public. “Do you have Restless Leg Syndrome – RLS? Ask your doctor…” Or, “Are you suffering from OIC? Opioid Induced Constipation is a common condition…” There is much for us to learn from those spending millions of dollars to brand their diseases in order to engage the public.

The fact that there are two spellings routinely used in the literature further compounds the problem. The United States, Canada and other countries spell the disease “lymphedema.” Great Britain and much of the rest of the world refers to it as “lymphoedema.” Try a Google search using these different spellings and you’ll get a completely different list of resources. This raises yet one more hurdle to universal recognition of the disease.

Combine all these factors and the result is that lymphedema manages the miraculous feat of both affecting more than 150 million worldwide, while being invisible and unrecognized by the public. One by one, we need to remove all the obstacles that stand in the way of lymphedema becoming a global priority.

In response to this, LE&RN will begin to routinely promote the acronym LE. Others may come up with an even better way to make lymphedema as commonly known as AIDS, or MS, or ALS. My guess is that if you asked most people to tell you what those acronyms stood for, you’d get blank faces or muddled answers at best. The fact is that it doesn’t matter. People merely need to attach the acronym to the disease, and then begin to accumulate information.

We also ask the international community to weigh in on the dilemma of two spellings competing in the literature. Change is never easy, and it means compromise. Collective use of an agreed-upon acronym brings the world a little bit closer.

German translation 

Eine Frau rief mich vor kurzem an. Sie hat seit Jahrzehnte Lymphödeme und sagte mir: “Als ich zum ersten Mal mit dieser Krankheit diagnostiziert wurde, sprach ich mit meinem Mann, Kindern und Freunden. Sie verstanden das alles nicht und konnten sich das Wort nicht merken. Lymphödeme sind jetzt meine private Hölle. ”

Dieses Szenario wird tausendmal am Tag wiederholt. Lymphödeme ist eine Kombination von zwei Worten (“Lymphe” und “Ödem”), dass die meisten Menschen nie in der täglichen Unterhaltung nutzen werden. Infolgedessen ist dieses kombinierte Wort eine wahre Herausforderung und es muss dafür gesorgt werden das es bei der Allgemeinheit bekannt wird. Dies gilt für viele Krankheiten, aber bei den meisten anderen Krankheiten gibt es eine Reihe von leicht zu merkende Akronyme.

Wir haben AIDS, MS, ALS, PTSD, SARS, TBI, RA, HPV und IBD, um nur einige zu nennen. In der Tat, schaut mal auf Wikipedia für Krankheiten und sie werden hunderte von Akronyme finden. Schauen sie allerdings unter „L” und Lymphödem ist keines in Sicht. Und doch gibt es in der Tat ein Akronym für Lymphödeme, das nur sporadisch verwendet wird – “LE”.

Schalten Sie Ihren Fernseher ein und Sie werden wahrscheinlich hören, wie Werbe-Riesen sich immer wieder damit befassen eine neue Krankheit für die breite Öffentlichkeit bekanntzumachen. “Haben Sie Restless Leg Syndrom – RLS? Fragen Sie Ihren Arzt … “Oder:” Leiden Sie unter OIC? Opioid Induced Constipation… “Es gibt sehr viel was wir noch lernen müssen von den Unternehmen die Millionen von Dollar ausgeben um eine Krankheit der Öffentlichkeit bekannt zu machen und sich dafür zu engagieren.

Die Tatsache, dass es zwei in der Literatur routinemäßig verwendete Schreibweisen gibt, steigert das Problem. Die Vereinigten Staaten, Kanada und anderen Ländern buchstabieren die Krankheit “Lymphedema.” Großbritannien und ein Großteil des Restes der Welt bezieht sich auf sie als “Lymphoedema.” Versuchen Sie eine Google-Suche mit diesen verschiedenen Schreibweisen und Sie erhalten völlig andere Listen der Ressourcen. Dies ist eine erhebliche Hürde für die allgemeine Bekanntmachung und Aufklärung diese Erkrankung.

Kombinieren Sie alle diese Faktoren und das Ergebnis ist, dass Lymphödeme Auswirkungen hat auf mehr den 150 Millionen Menschen weltweit, während diese Erkrankung unsichtbar und unerkannt bleibt für die Öffentlichkeit. Wir müssen alle Hindernisse einer nach einander beseitigen um dafür zu sorgen das Lymphödeme eine universelle Anerkennung erlangt.

Als Reaktion darauf beginnt LE & RN routinemäßig das Akronym LE zu fördern. Andere könnten einem noch besseren Weg parat haben um Lymphödeme so publik und bekannt zu machen, wie AIDS, MS oder ALS. Meine Vermutung ist, dass, wenn Sie die meisten Leute fragen, Ihnen zu sagen, wofür dieses Akronym steht, würden Sie leere Gesichter oder verworrene Antworten meistens erhalten. Tatsache ist, dass es keine Rolle spielt. Menschen müssen nur das Akronym kennen um dieses mit der Erkrankung in Verbindung zu bringen, und dann beginnen, sich zu informieren.

Wir bitten die internationale Gemeinschaft auch an dem Dilemma zu arbeiten das es zweier in der Literatur konkurrierender Schreibweisen gibt. Veränderung ist nie einfach, und es bedeutet sicherlich Kompromisse. Der kollektive Gebrauch eines vereinbarten Akronyms bringt die Welt ein wenig näher.



Thank-you, danke euch!

When I started my blog a little over 2 years ago, I wouldn’t have dared to think that one day so many people would be reading my blog and contacting me.

It shows me that so many are still left alone with their problems, physically and emotionally, often socially and that there is so much work to do.

It makes me happy being able to help, to show different perspectives and to open horizons, to help people dare to be bold, to be open for good products because they help us to keep or to reach a good life quality. To listen and to support.

For my fellow Americans, my numbers are probably peanuts for the States, in 2016 I had 30,311 readers from 65 countries. Most of them from Germany, Austria, Netherlands, Switzerland and the USA.

I can’t even count the emails and calls that I got and sometimes I felt frustrated because the patients have been conditioned to follow the dogma that isn’t really one.  Skeptical about all the fascinating new possibilities in treatment, stuck in the treadmill of the 60s.

Sure, there is not just one solution but many and this shows me that I must work even harder on spreading the word about the “new world” of treatments on an international level.  Concentrating even more on working together with those people, manufacturers, and the “Joan of Arcs” out there doing all they can to make the Lymphedema world a better one.

Thanks for showing me that I am on the right track and maybe one day my dream will come true and people, companies, will realize who I am and what I stand for.

Looking forward to your next visit and thanks for all the wonderful words.


Als ich mein Blog vor etwas mehr als 2 Jahren angefangen hatte, hätte ich nie gewagt zu glauben, dass eines Tages so viele Leute meinen Blog lesen und sich mit mir in Verbindung setzen würden.

Es zeigt mir, dass so viele immer noch mit ihren Problemen, körperlich und emotional, oft auch gesellschaftlich sich verlassen fühlen und dass so viel Arbeit noch vor mir liegt.

Es macht mich glücklich, das ich helfen kann, verschiedene Perspektiven zu zeigen und Horizonte zu öffnen, Menschen Mut zu geben, zu zeigen das es gut ist offen für neue und gute Produkte zu sein, weil sie uns helfen die gewünschte gute Lebensqualität zu erhalten und zu erreichen. Ich konnte Zuhören und unterstützen und habe viel Positives zurückbekommen.

Für meine Mitamerikaner sind meine Zahlen vermutlich lächerlich, 2016 hatte ich 30.311 Leser aus 65 Ländern. Die meisten aus Deutschland, Österreich, den Niederlanden, der Schweiz und den USA.

Ich kann nicht einmal zählen wie viele E-Mails und Anrufe ich bekommen habe und manchmal fühlte ich mich sehr frustriert, weil Patienten konditioniert worden/werden, um die Dogmen, die nicht wirklich welche sind zu folgen. Skeptisch über alle faszinierenden neuen Möglichkeiten in der Behandlung, und stehen geblieben in der Tretmühle der 60er Jahre.

Sicher, es gibt nicht nur eine Lösung, sondern viele, und das zeigt mir, dass ich noch intensiver daran arbeiten muss, das Wort über die “neue Welt” der Behandlungen auf internationaler Ebene zu verbreiten. Noch intensiver zusammenzuarbeiten mit den Menschen, den Herstellern und der „Jeanne d´Arc“ auf Erden, die alles tun, um die Lymphödem-Welt eine bessere zu machen.

Vielen Dank das ihr mir zeigt, dass ich auf dem richtigen Weg bin und vielleicht eines Tages wird mein Traum auch mal wahr werden das Menschen und Unternehmen erkennen, wer ich bin und wofür ich stehe.

Ich freue mich auf euch und lieben Dank nochmals für alle positive dinge die ich mit euch erleben und teilen durfte.

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I Support World Lymphedema Day!

Join us in Supporting World Lymphedema Day!
Lymphedema and lymphatic disease advocates from around the world are joining together to establish the first annual World Lymphedema Day. When LE&RN began hearing from advocates in Canada, India, Europe, and elsewhere that we needed a day to come together as a global community, we were proud to spearhead this call to action.
Sign the World Lymphedema Day Petition Today  

Visit our online petition site at, read LE&RN’s letter from Executive Director William Repicci, and add your signature. Then, add your voice! Share your story there. Tell the world why silence on this issue is no longer acceptable; why we must, finally, be heard. Finally, help this petition go viral. Forward it on social media and send it to friends and family via email.

Our goal is to have leaders around the world take notice. Together, we will change the world!

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Coming soon…. Monatlichen Produkt Review

Ich habe einige sehr gute Produkte die letzten Monate kennengelernt und ich werde einmal im Monat über die Produkte berichten und natürlich bekannt geben wo diese bezogen werden können. Ich möchte auch betonen das ich nicht von den Herstellern bezahlt werde, die kommen einfach nur in den Genuss eine authentische Bewertung von eine betroffene zu den anderen zu erhalten.

Ich wollte nur vorab erklären warum, weshalb, hervorragende Produkte hier nicht erhältlich sind damit man die ganze Politik versteht. Vor allen einige der Firmen haben ihren Sitz in Deutschland, das ist wirklich Paradox.

Die Behandlung des Lymphödems kommt nicht ohne Kompressionstherapie aus.

Ein Lymphödem verlangt in der Regel eine dauerhafte Therapie.

Das bedeutet ein lebenslanges Tragen der Kompressionsbestrumpfung.

Das ist ja alles nicht Neues für uns.  Genau die aussagen und Endgültigkeit hatte mich ja seinerzeit inspiriert die Welt zu bereisen um zu lernen, Kontakte zu knüpfen und alternativen zu erwerben und zu nutzen.

Nun gibt es hier in Deutschland ein Verband, der GKV Spitzenverband. Eine wirklich sehr kurze Erklärung dessen Aufgaben:

„Der GKV-Spitzenverband erledigt alle wettbewerbsneutralen Aufgaben für die gesetzliche Kranken- und Pflegeversicherung in Deutschland, Europa und auf internationaler Ebene. Er gestaltet die Rahmenbedingungen für einen intensiven Wettbewerb um Qualität und Wirtschaftlichkeit in der gesundheitlichen und pflegerischen Versorgung. Im Mittelpunkt seines Handelns steht dabei die Gesundheit der 70 Millionen Versicherten. Der GKV-Spitzenverband setzt sich für eine Gesundheitsversorgung ein, welche alters-, geschlechts- und lebenslagenspezifische Besonderheiten berücksichtigt. Die vom GKV-Spitzenverband abgeschlossenen Verträge und seine sonstigen Entscheidungen gelten für alle Krankenkassen, deren Landesverbände und somit mittelbar für alle gesetzlich Versicherten.“

Ihr fragt euch sicherlich warum ich das erzähle, who cares? Etc.

Wie ihr wisst empfehle ich Produkte die Medizinisch Hand und Fuß haben aber die nicht unbedingt hier erhältlich sind.  Dieses liegt an der GKV.  Die Produkte haben schon längst viel härtere Prüfungen mitgemacht und Genehmigungen erhalten, und zwar von der FDA.

„FDA: Ihre Aufgabe ist der Schutz der öffentlichen Gesundheit in den USA. Die FDA kontrolliert die Sicherheit und Wirksamkeit von Arzneimitteln der Human- und Tiermedizin, biologischen Produkten, Medizinprodukten und strahlenemittierenden Geräten. Dies gilt für in den USA hergestellte wie auch für importierte Produkte“

Die FDA ist gefürchtet, härtere genehmigungsverfahren gibt es nirgendwo und trotz der Genehmigung diese Produkte von der FDA macht die GKV diese Hersteller das leben schwer. In Deutschland, so meint man, ist alles was gut ist im Hilfsmittel Katalog, dieser Katalog ist wichtig bei Rezepte damit die Krankenkassen die kosten manchmal auch nur zum Teil, übernehmen. Ohne diese „nummern“ kann ein Arzt kein Rezept ausstellen.

Ich sage ok, aber warum können wir diese für uns so lebenswichtige Produkte nicht nur so kaufen. Warum? Weil man der Meinung ist das die betroffenen Menschen in Deutschland es gewöhnt sind das die KK kosten übernehmen. Die Hersteller sind dadurch gezwungen das Genehmigungsverfahren der GKV zu durchschreiten…. Das ist extrem zeitaufwändig, je nach dem kann das bis zu 2 Jahre dauern und finanziell eine absolute Belastung.

Und wer zieht die A karte dadurch, na ganz klar wir.  Uns stehen die Produkte nicht zur Verfügung und nur durch Umwege können wir die beziehen.

Ich reise sogar zu den Herstellern und plädiere das wir die Produkte brauchen, das sicherlich viele bereit sind die kosten selber zu tragen, ich versuche als Ambassadeur unsere Bedürfnisse klar zu machen aber letztendlich habe ich den Eindruck das es an Mut scheitert oder besser gesagt unser Anliegen, Bedürfnisse und Ansprüche unser eigenen Leben in die Hand zu nehmen werden nicht so ernst genommen wie es sein sollte.

Bis zum nächsten Mal, eure Mo


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ILF Conference 21-24 June 2017

2017Lymphedema Framework

The 7th International Lymphoedema Framework Conference will be co-hosted with the Italian Lymphoedema Framework and will be held in beautiful Siracusa, Italy from 21-24 June 2017.

Topics will include LIMPRINT and related ILF projects; National framework session; Children’s lymphoedema; Heart failure and chronic oedema in older patients and Wounds and chronic oedema.

The programme will of course offer plenty of networking opportunities.

Abstract submission will open shortly – please note the submission deadline of 31 January 2017.

We hope to see you in Siracusa in June.