Showing posts with label Lipedema Project.. Show all posts
Showing posts with label Lipedema Project.. Show all posts

Thursday, 14 April 2016

Oh, so you googled it....

During a recent medical appointment, a seemingly throw away comment made by my practitioner regarding how I discovered I might have Lipedema, exposed a dark spot in the current culture in the medical profession.  While I explained there is a lot of good information available on the internet, he responded dismissively …. “Oh, so you googled it then”

That comment then triggered a memory of seeing a post from a doctor friend of mine of a picture of a coffee mug that said:
“Please do not confuse your Google search with my medical degree.”

Actually I didn’t “google it”. Yes I discovered there was such a thing as Lipedema through the internet – but not in the way he was insinuating.  I didn’t just google my symptoms and then decide I knew better than the entire medical profession. Even if I had – I have 39 years of experience regarding my symptoms, conditions, bodily functions – 15 minutes and 3-4 questions don’t make you an expert on me – regardless of your degree.


 (I got the above image from a fabulous blog post from badlymeattitude.com - you can read the full article HERE )

I was running out of options after 34 years of attempting every diet on the planet and exercising regularly despite being in extraordinary pain when doing so. Still – no – weight loss. In fact I was gaining rapidly, without having a lifestyle or eating habits that supported such gains.  I thought I was losing my mind – and I was spiralling into depression and self-loathing. I was trying to engage through the online community of body positive bloggers – searching for some way of still finding some sense of value – despite being the antithesis of what society regards as valuable. On a plus size blog I found a link to a movie – a documentary by a lady called Catherine Seo. It was called The Disease They Call Fat – Lipedema. When I watched it – wow, did it resonate with me – and there were a whole bunch of women interviewed in the documentary that were battling the same weight gain in specific area issues as me. I had an answer. It is with this knowledge that I contacted a new GP and asked if they were willing to work with me to try and get a handle on this condition that was ruining my quality of life. Thankfully there are some open minded doctors out there – and we were able to make some progress with diagnosis and start heading towards becoming equipped with self help tools to manage my condition personally regardless of how little help is offered through the public medical system.




It’s ironic that medical professionals frown upon Lipedema patients’ googling their condition – when most Lipedema patients would be over the moon if anyone one treating them would take the time to google it. The information is there – it’s backed by experienced, well respected doctors. Lots of the information is free and there is specialized courses available to medical practitioners that cover Lipedema, from a bio medical perspective.  I don’t believe that doctors and specialists now have the luxury of brushing off Lipedema sufferers, because the condition is rare. Every day, more and more credible information is available about the condition.  It’s fair to say that the persistant ignorance within the medical profession regarding Lipedema is now a matter of choice, rather than a lack of available credible information.

Here is a good place to start Lipedema Education




Wednesday, 29 July 2015

There are 5 types of Lipedema

When I first discovered that I had Lipedema, I was trying to explain it to a friend. They looked it up and then questioned me because they had read that "Lipedema means you have big legs" - and they had observed that "you're kind of big all over" 

There are 5 Types of Lipedema - I have type 4. 

See all 5 types HERE

Friday, 17 July 2015

The Lipedema Project

Soooo exciting things are happening for me with The Lipedema Project! I have just gained an internship with The Lipedema Project! This means I will be able to help spread the word about Lipedema but also have access to some great resources and will be able to keep up to date with everything that is happening overseas with Lipedema.

I am in New Zealand, other than my doctor, I don't know any other medical professional that knows of Lipedema or would consider diagnosing it. It is very isolating, and I can't help think that if I feel isolated that others with this disease, diagnosed or not, will be feeling alone too. 
I want there to be resources available right here in New Zealand. I want a New Zealand support group. I want our doctors to be informed and have Lipedema acknowledged in New Zealand, as a disease that affects mobility and quality of life. 

There is an amazing documentary called The Disease They Call Fat by Catherine Seo that is now available on pre order through Lipedema Simplified webpage.

 Buy one, watch it, share it and buy one for your medical practitioner. If you get one now you get a discount and an even bigger discount if you buy two. (one for you and one for your doctor) here is the link for the discount

Monday, 1 June 2015

The Disease the call Fat - The Lipedma Project

There is an amazing lady called Catherine Seo, she has done fabulous work in getting a whole bunch of medical professionals together to put a symposium and a movie on Lipedma together!
She has a web site here is the link The Lipedema Project

Got this email from Catherine yesterday


It's now June 1 for our sisters in Australia, which means Lipedema Awareness month has officially started.

Here is your link for FREE access to the documentary The Disease They Call FAT for your viewing.

You will be able to access it from June 1-30 online. Beginning in July we will have High Definition downloads, DVDs, and many extras.

It's been an amazing journey for the past few years making this film. So many people have been involved to get this far. Now with you as part of it, we can go even further. I'm sure this film has had a huge impact on you. It's our goal to get as many women as possible to see it. Please join with us and help us spread the word, share with your doctors, friends, and others who can benefit. 

Thanks,
Catherine Seo, PhDc
and
Mark L Smith, MD, FACS
Directors, The Lipedema Project

So the link takes you to a fab movie about Lipedema and a bunch of ladies that have shared their stories. 
It's worth watching. 

I plan to watch it again, and take some notes.