Invisible illness … Lymphedema

This week has been Invisible Illness week. I thought that many with Lymphedema would fall into this category. Even if people notice that one limb is larger than another they have no idea the impact Lymphedema has on everyday life. Many of us put on long skirts,loose trousers or long sleeves and a big smile on our faces, hiding the effort it took to look this good!! There are also many with Lymphedema who experience pain and when cellulitis hits this can impact our plans and social engagements.. Those with Invisible Illnesses often do not get the support or understanding they need. We all need to speak out and share our stories to bring understanding to this little known illness.. Lets make lymphedema less invisible. #Lymphedema

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18 thoughts on “Invisible illness … Lymphedema

  1. Chronic illness is not for the weak, I agree! We are warrior women (and men of course) and while much about lymphoedema remains invisible, it’s good to recognize this in each other!

  2. Helen – So true – the invisible and also the mystery illness. Unless you’ve had it or someone you know has had lymphedema, no one has any clue what it is, how physically and psychologically impairing it can be. It is so important to spread the word. Too many women get cancer surgeries and then one year later get the constant reminder of the cancer in the form of lymphedema. Thank you as always for all that you do for our cause!
    Bridget

  3. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

  4. Most of the time my lymphedema is under control but I cut my hand badly last night – not bad enough for the ER but am now on the watch for LE changes….. Somethings never change.

  5. Senti necessidade de falar aqui um pouco mais sobre a minha experiência. Meu transplante completou 5 meses, e infelizmente ainda não vi melhoras. Inclusive, a parte superior da coxa, onde foi implantando os linfonodos, aumentou seu volume. Mas tudo isso estou relevando, porque diferentemente de todos que acompanho aqui, ainda não iniciei minha fisioterapia com drenagem. Apenas uso a meia elástica. Mas em novembro, combinei com meu médico que faremos a lipoaspiração. Fico animada em imaginar quando todo o excesso de gordura sair, a perna vai ficar fininha, e com a fisioterapia mantê-la assim.
    A propósito, em outro post eu vi um comentário de uma brasileira perguntando sobre médicos aqui na América, pois bem, quero indicar o nome do meu médico Dr. Fábio de Freitas Busnardo, tem seu consultório em São Paulo, além de ser Coordenador Chefe do Setor de Cirurgia Plástica do Instituto do Câncer do Estado de São Paulo. Se ela se interessar, ele está iniciando esses procedimentos, eu fui sua segunda paciente.
    Bem, apesar de estar ainda sem resultados promissores, e seus métodos pós cirurgia serem diferentes, eu confio nele.
    É isso. Boa sorte a todos nós.

    • Thank you so much… It can take a year or two to see the difference the LNT makes as the nodes have to grow.. Yes the liposuction will really help you too.. I found my leg is responding very well since I did the complex bandaging which really helped the nodestowork… Good luck with your on going therapy..
      I am also going to add a translation for your comment so others can understand.. Stay in touch … Helen

      I felt the need to talk here a bit about my experience. My transplant completed five months, and unfortunately have not seen improvements. Including the upper thigh, which was deploying the lymph nodes, increased its volume. But all that I am emphasizing, because unlike all that I follow here, still not started my therapy with drainage. Just use the compression stockings. But in November, combined with my doctor who will do liposuction. I am excited to imagine when all the excess fat out, the leg will be thin, and with physiotherapy keep it that way.
      Incidentally, in another post I saw a comment from a Brazilian doctors asking about here in America, well, I give the name of my doctor Dr. Fábio de Freitas Busnardo, has his office in São Paulo, besides being the Chief Coordinator Sector of the Institute of Cancer of São Paulo Plastic Surgery. If she is interested, he is starting these procedures, I was his second patient.
      Well, despite being still without promising results, and their methods are different after surgery, I trust him.
      That’s it. Good luck to us all.

      • I would love to connect with people dealing with this condition, especially folks contemplating or having undergone LNT or lyphmedema bypass surgery. I have been dealing with secondary lymphedema in my leg due to cancer surgery and would appreciate the support. Thanks! Patti

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