Subscribe Feed (RSS)Living with Lymphoedema
October 30th, 2008 by Peta | Filed under Managing Lymphoedema.
There are about 100,000 people in this country affected by a relatively little known condition called Lymphoedema.
Lymphoedema is a swelling that develops as a result of an impaired lymphatic system. This may be as a result of the lymphatic system not developing properly, or through damage or trauma. It can affect any part of the body but is most commonly seen in an arm or a leg. Although thought to be relatively uncommon, a recent study has estimated that at least 100,000 people in the UK may be affected by this condition. In order to understand how lymphoedema occurs, it is important to have an understanding of the lymphatic system in general - what it is and how it works. The two main types are Primary and Secondary.
For a full and better explanation of what Lymphoedema is all about visit The Lymphoedema Support Network
I have Lymphoedema with both of legs affected. It took a long time but it was finally diagnosed over 18 years ago following surgery and subsequent treatment for cancer. 1 in 4 women are at risk of developing lymphoedema. The situation is getting better in as much as cancer patients are now warned and thus given help in recognising the condition possibly developing. It is incurable so as a patient, you just have to live with it. Massive gaps in the care and treatment exist and vary from area to area as with lots of other illnesses.
I hope to use my Website and blog page to try and speed the word, to promote the awareness, lift the profile and try to raise money to help sufferers of what can be, a very distressing condition to live with. As a start to my campaign, The Tall Lady will be donating 2% of every £100.00 spent on my website. To start the ball rolling there are some Christmas cards produced for the Lymphoedema Support Network for sale. You can purchase these by going to Lymphoedema Support Network Xmas Cards.
Hi Peta
This may be your first experience at starting a blog - but what a great job!!!!!!
Thanks so much to for bringing attention to lymphoedema. I have many UK members on my various online support groups and they have been so frustrated by the lack of awareness and support in the UK.
You will be a true blessing to so many and I wish you many more blessings and God-send in your efforts.
Kindest regards,
Pat O’Connor
Hi Pat
Thank you so much for coming back to me, I was beginning to think I was alone. I have had a great day networking my business at a conference in Gloucester, the next county to me in Somerset. Yes, I did great stuff for The Tall Lady but also a huge amount of talking about Lymphoedema. The last person I spoke to was a tall lady who I had had my eyes on to pass her my card. Guess what? she was wearing a sleeve. Well you can imagine the ensuing conversation. I feel as though I have made big steps today!!!!. Keep up the comments please, we WILL make them sit up and take notice of us!!!!!
LOL
Peta
Hooray, I discovered this today This http://petitions.number10.gov.uk/lymphoedema will take you to The Downing Street Petition Site where you can sign for our cause. I have also found another site where fellow lymphers can go to talk to and contact each other. It is all part of the the awareness campaign. Please log in and sign for us even if you do not suffer with lymphoedema http://groups.msn.com/LetsTalkLymphedemapatientsGroup/_whatsnew.msnw it may help you understand the condition.
The guy Pat who runs the the site is amazing and what he does not know he will find out for you.
LOL PetaXXXX
Hi Peta
Well done you for pitching in and doing your bit for lymphoedema awareness! We need all the help we can get.
I wish you every success and will visit again.
Hi all
OK we now have an awareness Pin for Lymphoedema available for sale
Delivery will be about 4 weeks so if any one wants some to help the cause please let me know. There is also a page for MLDuk on Justgiving I will be doing a new post on this subject with all the links