Living with Lymphoedema

We the undersigned are writing in the hope you may be able to help us with our awareness campaign for sufferers of Lymphoedema here in the UK

It is very hard for me to explain what I am doing in an email but I will try and outline my cause.

I have become involved in an awareness campaign through my own condition, Lymphoedema.

This is a very distressing, painful and life long condition and as there is no cure, it has huge physical, psychological and long-term effects.

There are two types, primary and secondary, I have secondary lymphoedema following radical surgery and subsequent treatment for cancer. I have lymphoedema in both legs. It is as if Cancer is not enough! One in four women undergoing similar surgery and radiotherapy for breast cancer can be affected. Primary Lymphoedema is being born with it and sometimes referred to as Milroy's Disease or Elephantitius. There are 100,000 people in the UK with lymphoedema both men women and children. 

The condition has to be self managed if and when you are diagnosed. Nowadays most cancer patients are given the information about the possibility of lymphoedema developing, before or just after the surgery. 20 years ago this did not happen and it took months to find out what was wrong. It still can take a long time for it to be recognised, as a vast majority of GP's know very little about it. When you do find out about what you have, then there is virtually no help at all.  You are then referred to a Lymphoedema clinic.  The RUH have a lymphoedema clinic with one highly trained nurse/practitioner dealing with the whole area!

The Lymphoedema Support Network have done some amazing work over the past 12 years getting the GP's to recognise and understand the condition. They have lobbied the PCT's and MP's to try and maintain the pressure but so much more help is needed.

Intensive Manual Lymphatic Drainage (MLD) is one of the most effective ways of treating as it helps the patient to get to a stage where self-management is possible. Self-Management is the only course open to us as ignoring the condition can lead to all kinds of other health problems.

There is so much more I could put here to present my case, but it is a very complex subject that takes quite a lot of explaining.

So you will understand, I am doing several things here. I am trying to raise awareness and the profile for lymphoedema sufferers but most importantly raise some much needed cash to help give the patients.

 The Charity MLDuk - Lymfund is a body of practitioners who have joined together to ensure the standards of manual lymphatic drainage is carried out by professionals to treat and help. MLD is seen very much as cosmetic, with lots of beauticians offering the massage to help cellulite and water retention.

This is not MLD for lymphoedema. It is far more complex. The practitioners spend years training to practise and administer the treatment. 

Lymfund was set up within MLDuk to raise money to pay for intensive treatments for those who just cannot afford to have the hours of massage and bandaging needed to get control. So far they have managed to give 4 mini intensive treatments this year.

I can only give a guideline to the costs as I am going to Austria to the Vodder School in January for 3 weeks at the cost of approximately £4,000. My husband is paying for me, but many are not as fortunate to be able to do this. When the treatment is over, there is still the matter of garments that have to be worn to maintain the reduction in the affected limbs. Depending on the limb/limbs involved, these can cost in excess of £250.00 each.

FOUR Treatments per annum countrywide are not enough!!!

 Therefore my aim is to:

1. Start shouting and hope some will listen.

2. Try and find a high profile personality to help do just this.

3. Fundraise Fundraise and Fundraise

What can you do help? Well just one of my ideas for fundraising was inspired by watching the programme compered by Twiggy and encouraging all the women (I know loads) to use all the thousands of pounds worth of unworn/hardly worn clothes and shoes to come to a big swishing event here in the Somerset.

I think the current financial climate will help us achieve this.  I have a local designer willing to come and donate items for auction too.

This is just a brief outline of my idea so I am asking if you would be willing to get involved and help us.

I will use my own website and business www.thetalllady.co.uk to promote the event and spearhead the campaign and have started my blog to support the campaign. I am just one voice right now so I really need some help