What is Lymphoedema?
Lymphoedema is a condition in which part of the body, such as the arm or the leg, begins to swell. It can occur when some, or all, of the lymph nodes in a part of the body have been removed or treated with deep x-ray treatment (radiotherapy) during treatment for cancer. Approximately 25% of those treated for breast cancer in this way will develop lymphoedema of the arm.
Lymphoedema can influence many areas of a person’s life including appearance, choice of clothes, relationships and activities. The swollen arm can become heavy and cumbersome causing problems with its use. Management of the condition is most successful when the condition is recognised early and when the person affected has access to a trained lymphoedema therapist who is able to plan an individualised programme of treatment to reduce the swelling and provide long term advice and support in order to keep the swelling under control.
What is Katie’s Lymphoedema Fund?
The Fund was set up to support The Royal Marsden Cancer Charity in memory of Pat Wohlrab’s daughter Katie. After a breast cancer operation and the removal of lymph nodes, Katie began to swell and this condition made her very uncomfortable. It was almost unbearable. She looked up lymphoedema on the web and found an alternative clinic in London where they gave treatment in the form of Manual Lymph Drainage (MLD). It served her well and she continued to have MLD. This took away the swelling and the discomfort. She felt normal again and that gave her the respite and courage needed to combat the cancer.
Katie’s death her mother went to have a session of MLD at the same clinic. She was curious as to what it did and was able to ask the practitioner pertinent questions regarding this problem and also to make a list of people working in this field. With this information and with her own dermatological problems, Pat went to see Prof. Peter Mortimer, an eminent specialist in this field to ask for his support. She phoned the then Head of Fundraising, Angela Roden, at the Royal Marsden and arranged to meet her along with Emma Maziak, one of Katie’s good friends. We told her that we would like to set up a Fund in Katie’s name to support The Royal Marsden Cancer Charity, the reputation of which is second to none in the cancer field. After consultation with the powers that be, we were given the go ahead. We launched in 2004 under the good offices of Good Housekeeping magazine. It was one of their special ‘lunches’ and took place at the Mandarin Oriental Hotel in London.
What are our goals?
Our primary goal is to train NHS practitioners in the management and treatment of Lymphoedema. In 2001, when Katie died, only a few people knew about this condition and even doctors were ignorant of its existence. We hope to make this treatment more widely available on the NHS and we also think it is imperative to inform the public and make the country aware of the advantages of Lymphoedema management and treatment, in particular MLD. They can then make informed choices of treatment if they are suffering from Lymphoedema.
We aim to increase the availability of therapists specially trained to treat this condition. The Fund provides sponsored places on training programmes run at The Royal Marsden School of Cancer Nursing and Rehabilitation in London. The programme prepares nurses to manage and treat individuals with Lymphoedema, which can include learning the specific skills of lymphatic drainage massage. The fund also provides books and more funded the development of The Royal Marsden School of Cancer Nursing and Rehabilitation’s online learning module on Lymphoedema which is accessible to a wider number of nurses.
Who runs the Fund?
Our original committee consisted of Jenny Tripp Black (Chairperson), Emma Maziak, Pat Wohlrab, Samantha Sage and Penny Graves. Due to family and work commitments, Samantha and Penny were sadly not able to continue, but their contribution in the setting up of the Fund was significant. Emma stood down in 2017, with Jackie Wileman joining the Committee after having visited the garden at Hampton Court in 2016. Jessica Phillimore joined the Committee at the beginning of 2018 after working closely at The Royal Marsden Cancer Charity. Jenny and Pat remain fully involved.
The origins of our logo
The logo was designed by a graphic artist friend of Penny’s (founding Committee member). We gave certain indications of what we wanted as Pat had already tried out a number of designs. These were mainly with hands and either looked too “prayerful” or too clumsy. The idea of the waves is to show the lymph system and how it needs to circulate. MLD is the process given when it is blocked and cannot circulate.
Here are some early designs Pat created before we decided upon our current logo.