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Showing posts from July, 2017

A pill for lymphedema? Talking ubenimex’s potential with Dr. Quan of Eiger BioPharmaceuticals

Living with lymphedema can be a real pill — but what if it could be treated with one? This is a great post from the Lymphie Life - written by Alexa Ercolano., two months ago, but still incredibly relevant Recent studies indicate it’s possible, and may even be a reality sooner than we think thanks to clinical trials of a drug called ubenimex. Last summer I wrote about  the ubenimex trials , which at the time of writing had just kicked off by dosing their first patient. The news generated a huge response from the lymphedema community — one of hope, excitement, and  lots  of curiosity — so I’m back with an update! Photo courtesy Dr. Quan. I recently had the incredible opportunity to speak with Dr. Joanne Quan, Chief Medical Officer at  Eiger BioPharmaceuticals , a biopharmaceutical company focused on the research, development, and commercialization of therapies for orphan diseases; they are also sponsoring  the ubenimex clinical trial . Dr. Quan and I talked about the ubenimex

Why is water important?

If like me you read all the lymph blogs and sites on Facebook you may have come across this already - if not prepare to learn and take on that water! Personally I still have to have a coffee - that sounds terrible, but I am getting more H2O than ever What Would Happen If You Replace All Drinks with Water We all know about the harm drinks other than water can cause us, but what if we replace them with it completely?  Chris Bailey , a popular blogger and lecturer, carried out some month-long research, which we at  Bright Side  have decided to summarize for you in illustrated form. Illustrated by Dinara Galieva  for  BrightSide.me Based on materials from  A life of productivity  

Lipoedema Treatment Goals and Treatments

You can do it

Here a post originally posted on chronically motivated “You don’t need to hide your lymphedema from the world, that it’s part of you. It’s what makes you unique and that you should embrace it” – Kerry. I’m Kerry Thomson. I’m wife to Pete, mum to Angus (5), Tilly (3) and Rory (1). We live on Pete’s family farm in wilds of Scotland together with one dog, five chickens, 150 cattle and 2500 sheep. Before becoming ‘mum’ I was Relationship Manager for the most incredible charity Children’s Hospice Association Scotland (CHAS) and prior to that I worked in London as a reporter for a fine art and antiques newspaper. I love colour, loud music, good food, red wine, black coffee, a good gin and tonic and my beloved family. When I’m not at home on the farm you can find me breathing in the surf on a windswept beach in my adored Cornwall or talking the hind legs off a donkey with my oldest pals in my native Northern Ireland. I have Primary Lymphedema on my left leg – stretching from the

Got Oedema in The UK - you need to visit this site

If you have an oedema related condition in the UK the best first place of call - whether you have seen your doctor or not is the Lymphoedema Support Network. http://www.lymphoedema.org/ I recently attended a meeting given by Professor Peter Mortimer, the first guy in lymphatics, and still the best. Even he said that in this realm of medicine everyday he meets sufferers who know more about the condition than he does. He doesn't feel threatened ofcourse, he puts it in his databank and stores it for use in the future. The point is that as a sufferer , YOU, must become the expert, not on a genetic level, but YOU must understand your condition and what's available from where. Sure some of it is available on prescription, but from time to time we all have to invest in our health and dig into our pockets. How many times I meet sufferers who have no idea which companies garment they are wearing, what the class is, how long they have had it. This is your condition and unfortunatle

Important UK Lipoedema Conference

Hi Everyone Please take down the dates for the below Lipoedema congress in the UK. It's important. Too many sufferers are being either not treated, incorrectly treated or labelled fat. It's important that we all understand this condition to tell other people but also to defend our position knowledgeably and professionally. Also, if we don't control our lipoedema, potentially we also get lymphoedema - so lets do this for us, and those who are not currently in the know

Kathy Bates is an amazing woman

Not just a great actor, but a celebrity, who, even though she has a medical condition which changes her appearance, has come forward to speak about living with lymphoedema to show a generation of sufferers that you can overcome! Kathy Bates Reflects on Life With Lymphedema The award-winning actor and cancer survivor shares her new outlook on life By  Gina Shaw Late in the summer of 2012, Kathy Bates felt like she was nearing rock bottom. Even so, she hoped for some kind of sign from the universe that her life was about to get better. Then a bird crashed into her window. The award-winning actor was still reeling from NBC's spring cancellation of her series,  Harry's Law , just months before when she started noticing strange pains in her  abdomen . "And that past Christmas, just before we were canceled, I had been really exhausted," says Bates. "But I just chalked it up to all the work on the show, and I let months go by." The new

Seiden care for oedema sufferers - click the logo