Meet The Celebrity Advocates

Lymphoedema is a ghastly condition too widely ignored. Lymphoedema appears mainly in the arms or legs, as well as other parts of the body. I hate to think of how it affects Gemma, a lifelong photographer who is now unable to lift the camera, due to the disease affecting her right arm and hand.

Fingers crossed, one day sometime soon, people will put on their thinking caps and realise Lymphoedema is a ‘giant’ and must be taken as seriously as other afflictions, that is why research is so vital. We have recently made astonishing advances in other branches of medicine; now is the time to put Lymphoedema centre stage.

 

Lymphoedema is a little-known illness.
My assistant has primary Lymphoedema in her leg, so I am aware how uncomfortable and cruel this condition can be. A heavy swollen leg is not only a disfigurement but physically debilitating. It can lead to unexpected infections which can cause sepsis.

Lymphoedema is arguably one of the most neglected diseases in healthcare today. Few doctors know about it or understand it. That is why it can take a long time before a correct diagnosis can be obtained. There are so few specialists in Lymphoedema that accessing treatment is not easy. We must fight to make this world more aware of Lymphoedema and have more help available to those suffering with the condition.

 

We are struggling to raise the research funds to find a cure for Lymphoedema, but there is a ray of hope. While making a speech at the National Institutes of Health, I learned that researchers may one day have the opportunity to discover the pivotal role of the lymphatic system in the treatment of cancer metastasis, AIDS, auto-immune diseases, obesity, cardiovascular disease, organ transplants as well as those of us suffering from cancer-related Lymphoedema or congenital Lymphoedema. Researchers’ discoveries may unlock a Pandora’s box of cures for a host of diseases. These pathological heavy hitters might finally draw attention to our plight, the plight of millions. I look forward to that day.

 

Lymphoedema is one of those conditions whose name makes it sound obscure, marginal. But it isn’t: it strikes everywhere and anywhere and is shatteringly debilitating. We need to take it very seriously indeed. It savagely attacks one of the body’s most astonishing and indispensable mechanisms, the lymphatic system, the superbly engineered network of locks and pumps that transports necessary nutrients to the cells, all the while collecting and disposing of waste products, bacteria, and damaged cells.

We know what it is; we know how to contain it. What we don’t know is what causes it. Investment in research is urgently needed: nearly a quarter of a million people are affected. Acquainted as I now am with the profile of Lymphoedema, I realize that my grandmother, who was plagued with cellulitis, her limbs, ankles and joints severely inflamed – one of its other frequent symptoms – must have been a sufferer. Her life was hell as a result of it. We could relieve many of her symptoms now. But we’re still no closer to prevention.

 

If you are happy and healthy it barely crosses your mind that a tiny accident of fate could ruin your life. If I had had Lymphoedema in my hands I would not have been able to butter bread, never mind cook for the glitterati, eat cake on telly, lunch with the Queen or make pizza with my grandchildren.

Indeed, before my friend Gemma Levine got Lymphoedema, and decided, in typically forthright Gemma style, to do something about it, I’d no idea even what it was. I didn’t realise that it is a debilitating, extremely painful, ugly, incapacitating, and incurable disease. It’s horrible.

So, the least her friends can do is give her a bit of support. She deserves it. Treating and curing Lymphoedema may be a way away, but nothing will happen without research. And money. And people who care.

 

Towards the end of his life, Dad found that a special massage was a help at that point of his illness. There was only one person in London we could find who did this kind of massage for Lymphoedema sufferers. He found it very beneficial, and I hope now – thirty five years on – this is more commonly available.

 

I knew very little about this dreadful disease until Gemma asked me to write this piece. In a world when we obsess about our lines and our lips don’t seem full enough, and our bottoms need padding out; where people become addicted to distorting plastic surgery and young people suffer body dysmorphia, it is sobering to look at the symptoms and results of this terrible illness.

I suspect the public profile of Lymphoedema is because it is a disease we connect with, perhaps, people in distant lands, but it is here among us, and the fact that it can be a side effect of a supposedly curative cancer treatment makes it of more immediate concern than ever.

Of course, we must raise money for research, which means raising the profile of Lymphoedema.

 

So many of our colleagues in the world of music rely on hand and arm movements to play instruments. With Lymphoedema, it is impossible. It is incredibly depressing to know that there are those who have had to drop out of the profession for this reason. We hope one day, there will be a cure.

 

It is now many years ago since I was held for almost five years in solitary confinement as a hostage. Even though it is a long time ago I still have vivid memories of what it is to be like to suffer illness and to be without any form of medical treatment whatsoever. For most of my time in captivity I kept reasonably well but in the latter months succumbed to a severe chest infection which caused me to lose consciousness on several occasions. For the final few weeks in captivity, I was moved from my solitary state to be with three other hostages. At night, when I was feeling very poorly indeed one of my fellow captives stretched out as far as his chains would allow and placed his hand on mine. He did not say a word but the comforting fact that there was another human being who cared and who was with me at this time of difficulty gave me strength to continue.

Lymphoedema is not a well-known medical condition and those who suffer from this disease know that more research needs to be conducted to combat this life-threatening illness. My fellow hostage showed he cared by stretching out his hand. More and more people need to be informed about Lymphoedema so that they also can stretch out their hands and give their support.