O mundo das Doenças Raras | Linfedema

 

Mary Kate tem um canal no youtube

 

Como lida Mary Kate com o seu linfedema

Mary Kate tem, sem dúvida, uma atitude inspiradora. Ela criou  um canal no youtube para partilhar connosco a sua condição de linfedema primário.

Sigam o seu canal e sigam o seu exemplo inspirador  😊

Vacinas | COVID | Lindedema

Não havendo  ainda evidencia cientifica sobre muitas questões COVID versus linfedema e lipedema. Há, no entanto, agora uma orientação para as pessoas que têm linfedema nos membros superiores: a vacina também pode ser tomada na coxa anterolateral

Pfizer-BioNTech COVID-19 Vaccine

Moderna COVID-19 VaccineModerna COVID-19 Vaccine

Linfedema Depois do Cancro - Um Livro da stile_compresso

Já faz algum tempo que pensei em partilhar convosco um livro que  foi escrito na sequência de um  linfedema pós cancro

Anna Maisetti, autora do livro, é italiana e é mais conhecida pela stile_compresso, no instagram. Os seus post, por norma, trazem cor à vida fazendo que os percalços que esta nos trás sejam encarados de uma forma diferente. Veja, o livro na Amazon (está disponivel em inglês e italiano) e, se assim entenderam, sigam a stile_compresso e Tito, o seu cachorro inseparável, 

Linfocintigrafia, a experência de Pernille

Como doentes de linfedema perguntam-nos bastante vezes sobre a nossa experiência com linfedema e o exame de linfocintigrafia. Já relatei aqui  uma das minhas experiências e agora é a vez da Pernille, uma  da vozes do lymphedema que podemos encontrar no instagram, o fazer.

Esta também não foi a primeira vez que  Pernille  experienciou a injeção necessaria para obter o contraste necessario a este exame mas lá ler as orientações que nos são deixados no seu post, autoroizado a ser aqui publicado.

Caso não tenham tido oportunidade de aprender inglês peço, por favor, que accione google tradutor,  assim não perderão "em directo" o que esta dinamarqueza nos relata.

LYMPHOSCINTIGRAPHY

Today I had a lymphoscintigraphy in my local hospital. It is a procedure that provides images of the lymphatic system by injecting tiny amounts of radioactive particles and then images are taken at different times to see how fast and how the particles "travel" through your lymphatic system and your tissue.

This is the second time I had it done and this was the sum of the procedures (for the leg). I got a small injection in between the big toe and the second toe on each leg. Then I had to walk for 20 min without the stocking and return to have the images taken lying down very still. Today I had the second injection on the top of my foot at the base of the space in between the big toe and the second toe. Last time I had it under my foot (ouch). Then I had to walk again for another 20 min and return to get the images taken. This time I have to collect my results in 5 days while the first time I got them right away. I got images from both sessions along with explanations.

Here are some tips for you to prepare:

• Leave your jewellery at home (it's just easier)
• Wear clothes and shoes that are easy to remove and put on again
• Wear ample walking shoes (for leg lymphies)...my foot started to swell in the time I was without compression so it was a good thing I could fit in the shoe
• Ask if you could apply EMLA cream in advance because it does hurt especially on the bad leg (think about a needle going through a piece of tissue or a piece of leather...that is how I felt the difference between the two feet)
• Bring some antibacterial wipes so you can wipe your feet as you walk to and from the machine to the place you need to dress (you never know where that mop has been, cleaning that floor)
• Consider a piece of paper to stand on when you get dressed
• Remember your gloves for when you put on the stocking again and if you swell a lot then perhaps bring an old stocking which will be easier to get on if you get stressed by such procedures.
• It was quite chilly in the room I was in, so consider your clothes as you need to be comfortable for a length of time (I wore a tank top and a blouse but could have done with a thicker top or cardigan).
• If you are by yourself bring your headphones so while you do the walk around the hospital you can listen to music
• Don't drink a liter of water before and make sure you go to the bathroom in the walking period as you have to lie still once the images are taken. I believe it was at least 20 min each time (for me).
• All in all it took 2 hours from I arrived to I left.

I hope this can help you prepare for such a procedure and I would love for your to share your tips and especially if you have arm lymphedema or some other body parts to compare our experiences. 

Lipedema, not a closed case: A new International consensus

A LIO Lipedema Italia - Associazione Nazionale Pazienti affetti da Lipedema dinamizou um  webinar à volta do lipedema e das guidelines focalizando-se no último consensus (2020). Este webinar foi transmitido em várias linguas no FB, youtube e instagram.

Ao debate, completamente aberto, estiveram presentes as  Associações de Doentes e a classe médica e cientifica.

Este foi o primeiro webniar que teve lugar e decerto nos seguintes outras Associações, Médicos e Cientistas vão querer estar presentes.

Fiquemos a aguardar. Sente-se a vontade e a necessidade de um diálogo aberto entre todos e de uma enorme colaboração por parte dos te´cnicos de saúde e da comunidade cientifica. Uma coisa é já certa:o muito mais pesquisa  terá que ser feita para esta doença que está cada vez mais visivel. 

No evento, publicitado no FB  e ali poderemos ver mais detalhes sobre este evento que abriu a porta ao diálogo, No entanto deixo aqui a lista dos oradores participantes e das Associações que estiveram presentes:

Oradores:

Dr. Karen L. Herbst, MD, PhD

Department of Medicine, University of Arizona; Karen Herbst, MD, PC, Los Angeles, CA, USA

Dr. Sandro Michelini

Department of Vascular Rehabilitation and Oedema Management, San Giuseppe Hospital, NHS Marino (Rome), Italy, Past President ISL (International Society of Lymphology), Past President ESL (European Society of Lymphology), President of ITALF (Italian Lymphedema Framework)

Q&A Discussants:

Dr. Agostino Bruno,

Department of Plastic and Reconstructive Surgery. Sant'Eugenio Hospital, Rome, Italy

Dr. Marina Cestari

Department of Angiology NHS-Terni, Italy. Founder of Pianeta Linfedema and responsible for the ESL European Society of Lymphology Web Site

Dr. Isabel Forner-Cordero, PhD

Physical Medicine and Rehabilitation Service, University Hospital La Fe, Valencia, Spain

Paula M C Donahue, DPT, CLT-LANA

Department of Physical Medicine and Rehabilitation, Vanderbilt University Medical Center, Nashville, TN, USA

Dr. Med. Yvonne Frambach

Hanse-Klinik, Lübeck, Germany

Dr. Emily Iker, MD

Lymphedema Center, Santa Monica, CA, USA

Linda Anne Kahn, HHP, CMT, CLT-LANA, CHNC

Lymphatic Therapy Services, San Diego, CA, USA

Leslyn Keith, OTD, CLT-LANA

The Lipedema Project, Boston, MA, USA

Dott. FT Sara Mantovani, FT

StudioErre physical therapy center, Brescia, Italy

Dr. Lucia Mazzolai, PhD

Angiology Division Lausanne University Hospital, Lausanne, Switzerland. Chair of Lymphosuisse Association

Dr. Lindy McHutchison, MD

The Lipedema Center, Carolina Vein Center, Durham, NC, USA

Professor Christine Moffatt, CBE FRCN PhD MA RGN DN

Nottingham Trent University, UK. Chair International Lymphoedema Framework

Dr. Alberto Onorato, PhD

Linfamed reahabilitation center, Udine, Italy, President of Associazione Lotta al Linfedema odv, Italy

Dr. Jaime Schwartz, MD, FACS

Total Lipedema Care, Los Angeles, CA, USA

Molly Sleigh, OTR/L, CLT-LANA

Lighthouse Lymphedema Network, Atlanta, GA, USA

Professor. Dr. Med. Wilfried Schmeller

Hanse-Klinik, Lübeck, Germany

Professor Dr Med. Uwe Wollina

Head of Department of Dermatology and Allergology & Certified Skin Cancer Center, Städtisches Klinikum Dresden, Germany

Dr. Thomas Wright MD

Lipedema Surgical Solutions, O’Fallon, MS, USA

as Associações de Doentes presentes:

Adalipe – Asociación de Afectadas de Lipedema de España. Maria Pacheco, (Secretary), Adalipe

AMLF Association Maladie du Lipœdème France. Elodie Sauvageot (Chair), Aines Loghmari (Webmaster and facilitator), Rhislaine Vannson (Research and documentation collaborator)

andLINFA - Associação Nacional de Doentes Linfáticos (Portugal). Manuela Lourenço Marques, (Chair), andLINFA

DALYFO - Dansk Lymfødem Forening, Lene Tofteng Hansen (Board member, responsible for supporting patients with lipedema)

FDRS, Fat Disorders Resource Society, Cheyenne Brinson (President), FDRS

LIO Lipedema Italia onlus (Italy), Valeria Giordano (Chair) and Alessandra Lisini (Board member), LIO

Lipedema Foundation, Felicitie Daftuar (Founder) and Guy Eakin (Chief Scientific Officer) of Lipedema Foundation

Lipedema Simplified, Catherine Seo, (Chair), Lipedema Simplified, USA

Lipoedema Australia, Nola Young (President), Lisa Pyle (Secretary), Lipoedema Australia

Lipoedema UK, Sharie Fetzer (Chair) and Kate Forster (Secretary), Lipoedema UK

Lotta al Linfedema ODV, Italy

LymphoSuisse (Switzerland), Danaé Panchaud, (Member and author of lipoedeme.ch), LymphoSuisse

NLNet, Nederlands Netwerk voor Lymfoedeem & Lipoedeem, Drs. Wouter Hoelen, (responsible for research) NLNet, Marije Strobos (lipedema experience expert) NLNet

Resilia - Linfa per la Vita. Maria Antonietta Salmè, (Chair), Resilia (Italy)

SÖF Svenska Ödemförbundet (Sweden). Margareta Haag (Chair)

Talk Lipoedema. Isobel MacEwan (Chair), Talk Lipoedema

Doenças Crónicas e COVID 19

Saiu hoje no Jornal Público uma carta à Senhora Ministra da Saúde onde as Associações de Doentes referem a necessidade de resposta às doenças não COVID. (aqui).

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