Lymphodema.. Disability or not?

minxwolf

Hi I have a query. Is Lymphodema classed as a disability? It is incurable and worsens through your life. It impares daily life and often leads to depression and despair. All helpfull comments:) from those in the know would be gratefull. Thank you.

Indie_Kid

A disability is something that affects your ability to carry-out day to day activities - speaking, hearing, walking, communicating, etc.

There is a sticky at he top of the forum called "what is classed as a disability?"

sunnyone

minxwolf wrote: »

Hi I have a query. Is Lymphodema classed as a disability? It is incurable and worsens through your life. It impares daily life and often leads to depression and despair. All helpfull comments:) from those in the know would be gratefull. Thank you.

Its a symptom of being a larger person (or one other thing) and losing weight can help, a family member has lost 5 stone to improve it, with there ill health it was hard but it really made things better.

Lymphoma isnt a disablity in its self but the affects may be which is why anyone whos at risk should try to make sure that they lose weight.

Oldernotwiser

minxwolf wrote: »

It is incurable and worsens through your life. .

That isn't necessarily true anymore. There are lots of new treatments available which help many people.

Trialia

I have a friend who suffers from chronic lymphoedema throughout his legs and lower back, for which his doctors know no apparent cause, and he can't sit or stand still for more than about five minutes at a time due to the pressure causing him pain. It does significantly impair his daily life, so I think that yeah, for some people it can be a disability, if it can't be well treated.

bertiebat

Hi minxwolf,

Well maybe someone who actually suffers from secondary lymphoedema in both arms/chest caused by breast cancer treatment should reply following sunnyone's post. I had no idea that people thought that it's CAUSED by being a 'larger person'. IT IS NOT! It can be helped (NOT cured) with weight loss but that is a completely different matter.

For the benefit of the uninformed.
Taken from the NHS choices website:

Lymphoedema is a chronic condition that causes swelling in your body's tissue. Typically, either the arms or legs are affected, though, in some cases, there may be swelling in the chest, head or genitals. This can lead to pain and loss of mobility.
Lymphoedema is caused by damage or disruption to the lymphatic system.
What is the lymphatic system?
Most people are aware that they have a circulation system that carries the blood from the heart to the rest of the body, but the body also has a second circulation system, called the lymphatic system.
The lymphatic system is made up of a series of vessels and glands, known as lymph nodes. These are spread throughout your body, much like your blood vessels.
The lymphatic system has two important functions:

• It helps fight infection. The lymphatic system carries a white fluid known as lymph, which is full of infection-fighting cells known as lymphocytes.
• It drains excess fluid from tissue. As the blood circulates through your tissue it leaves behind waste products in the shape of fluids and proteins. This excess fluid is moved through tiny capillaries into the lymphatic system, which then filters out any bacteria or viruses. The clean fluid is then passed back into your blood.

If the lymphatic system becomes disrupted or damaged it can lose the ability to drain fluid, and the excess fluid will then cause tissue to swell.
People with lymphoma are also more vulnerable to infection, as the infection-fighting lymphocytes are prevented from reaching the part of the body that is affected by swelling. A bacterial infection of the skin known as cellulitis is one of the most reported infections in people living with lymphoedema.
Type of lymphoedema
There are two main types of lymphoedema:

• Primary lymphoedema is caused by faulty genes, and develops at birth or shortly after puberty.
• Secondary lymphoedema is caused when an infection, injury, trauma or cancer damages the lymphatic system.

Secondary lymphoedema often develops as a side effect of cancer treatment. The radiotherapy used in cancer treatment can damage the lymphatic system. It's also sometimes necessary to remove a number of lymph nodes in order to prevent a cancer from spreading, which can also damage the lymphatic system.
How common is lymphoedema?
Primary lymphoedema is rare. It's estimated that one in every 10,000 people will be affected by primary lymphoedema.
Secondary lymphoedema is a relatively widespread condition. It's estimated that 100,000 people in the UK have secondary lymphoedema. The condition is more common in women than men, possibly because secondary lymphoedema can arise as a side effect of the treatment of breast cancer.
There is no cure for lymphoedema, but it is possible to control the symptoms using a combination of different techniques, such as massage and compression clothing.

I have been told to ensure that I don't lift/carry heavy things or in fact over use the crutches which I'm now stuck on (chronic MRSA osteomyalitis/septic arthritis). So it does actually cause me additional problems which could be described as a disability but I try not to overly dwell on it. I wear a sleeve which along with the crutches makes me look like I've been in some sort of accident (best comment I had was 'are you the person who was run over by the zebra' when I was in Kenya).

I'm sorry that you are suffering from this condition and to answer the question on whether lymphoedema is classed as a disability it is acknowledged as such in the Decision Maker's Guide (under breast cancer). However I think they only take account of severe lymphoedema as I was turned down for DLA when I applied (fitted the 'cooking meal' criteria not being able to lift pans of water etc). Was thinking of appealing (on principal) when I bust up my leg so it became rather academic as I then qualified for different reasons. AND NO I WASN'T TRYING TO DISABLE MYSELF.

I'm fairly new here myself but wonder whether you might get some more understanding answers on some of the other sites that have specific lymphoedema forums. Not sure if yours is breast cancer related, but 'breast cancer care' have a forum on this.

Other useful site are:
The Lymphoedema Support Network
Step up speak out is a good american one.

Hope you get some helpful replies from those in the know as requested.

Good Luck!

jandy54

Lymphodema is most definately a disability. I suffer in both arms, chest and now legs. This came about after having Breast Cancer twice. I claim the lower DLA as I should not carry a saucepan, kettle etc. Sometimes people just don't understand the consequences of Lymphodema. I had never heard of it before before I suffered from it.

minxwolf

Hi, Thank you for the feed back, I Have primary lymphoedema in my right leg, this came on with pregnancy. I loved the Zebra quote, You have to laugh, I have been given advice by many well wisher to do with my badly swollen ankles/foot, its too long an explination to go into why I have wotsits instead of toes!:rotfl:

bertiebat wrote: »

Hi minxwolf,

Well maybe someone who actually suffers from secondary lymphoedema in both arms/chest caused by breast cancer treatment should reply following sunnyone's post. I had no idea that people thought that it's CAUSED by being a 'larger person'. IT IS NOT! It can be helped (NOT cured) with weight loss but that is a completely different matter.

For the benefit of the uninformed.
Taken from the NHS choices website:

Lymphoedema is a chronic condition that causes swelling in your body's tissue. Typically, either the arms or legs are affected, though, in some cases, there may be swelling in the chest, head or genitals. This can lead to pain and loss of mobility.
Lymphoedema is caused by damage or disruption to the lymphatic system.
What is the lymphatic system?
Most people are aware that they have a circulation system that carries the blood from the heart to the rest of the body, but the body also has a second circulation system, called the lymphatic system.
The lymphatic system is made up of a series of vessels and glands, known as lymph nodes. These are spread throughout your body, much like your blood vessels.
The lymphatic system has two important functions:

• It helps fight infection. The lymphatic system carries a white fluid known as lymph, which is full of infection-fighting cells known as lymphocytes.
• It drains excess fluid from tissue. As the blood circulates through your tissue it leaves behind waste products in the shape of fluids and proteins. This excess fluid is moved through tiny capillaries into the lymphatic system, which then filters out any bacteria or viruses. The clean fluid is then passed back into your blood.

If the lymphatic system becomes disrupted or damaged it can lose the ability to drain fluid, and the excess fluid will then cause tissue to swell.
People with lymphoma are also more vulnerable to infection, as the infection-fighting lymphocytes are prevented from reaching the part of the body that is affected by swelling. A bacterial infection of the skin known as cellulitis is one of the most reported infections in people living with lymphoedema.
Type of lymphoedema
There are two main types of lymphoedema:

• Primary lymphoedema is caused by faulty genes, and develops at birth or shortly after puberty.
• Secondary lymphoedema is caused when an infection, injury, trauma or cancer damages the lymphatic system.

Secondary lymphoedema often develops as a side effect of cancer treatment. The radiotherapy used in cancer treatment can damage the lymphatic system. It's also sometimes necessary to remove a number of lymph nodes in order to prevent a cancer from spreading, which can also damage the lymphatic system.
How common is lymphoedema?
Primary lymphoedema is rare. It's estimated that one in every 10,000 people will be affected by primary lymphoedema.
Secondary lymphoedema is a relatively widespread condition. It's estimated that 100,000 people in the UK have secondary lymphoedema. The condition is more common in women than men, possibly because secondary lymphoedema can arise as a side effect of the treatment of breast cancer.
There is no cure for lymphoedema, but it is possible to control the symptoms using a combination of different techniques, such as massage and compression clothing.

I have been told to ensure that I don't lift/carry heavy things or in fact over use the crutches which I'm now stuck on (chronic MRSA osteomyalitis/septic arthritis). So it does actually cause me additional problems which could be described as a disability but I try not to overly dwell on it. I wear a sleeve which along with the crutches makes me look like I've been in some sort of accident (best comment I had was 'are you the person who was run over by the zebra' when I was in Kenya).

I'm sorry that you are suffering from this condition and to answer the question on whether lymphoedema is classed as a disability it is acknowledged as such in the Decision Maker's Guide (under breast cancer). However I think they only take account of severe lymphoedema as I was turned down for DLA when I applied (fitted the 'cooking meal' criteria not being able to lift pans of water etc). Was thinking of appealing (on principal) when I bust up my leg so it became rather academic as I then qualified for different reasons. AND NO I WASN'T TRYING TO DISABLE MYSELF.

I'm fairly new here myself but wonder whether you might get some more understanding answers on some of the other sites that have specific lymphoedema forums. Not sure if yours is breast cancer related, but 'breast cancer care' have a forum on this.

Other useful site are:
The Lymphoedema Support Network
Step up speak out is a good american one.

Hope you get some helpful replies from those in the know as requested.

Good Luck!

minxwolf

Hi, I do know the treatments that are avilable. Unfortunatly those of us who have it for other reasons other than cancer, or if our lymphodema is not as grand as some cases really are the bottom of the list. I am 31 and get to see my nurse twice a year, I did have a course of decongestive massage and it helped reliving me of many litres of fluid. It is however only temporary relief, and needs doing every week. There are physically not enough nurses to tend to everyone and no money going into research. Unless you can afford to pay for this treatment every week you are just left to worsen and look after yourself. I do not look after myself as I should as I have a family to care for and not enough hours in the day. I also know tere is treatment that is very successful in Austrailia, but again..Its a bit far to go, and on a plane too!!not good for the legs. Austrailia are far ahead of us, and this is due to the fact that their Prim Minister has it. Oh well..could be worse.:(

Oldernotwiser wrote: »

That isn't necessarily true anymore. There are lots of new treatments available which help many people.

hrafndot

OOOPS, SORRY, TRUST ME TO FIRE OFF A QUOTE IN THE HEAT OF THE MOMENT WITHOUT READING ALL THE CONTRIBUTIONS!!!!

sunnyone wrote: »

Its a symptom of being a larger person (or one other thing) and losing weight can help, a family member has lost 5 stone to improve it, with there ill health it was hard but it really made things better.

Lymphoma isnt a disablity in its self but the affects may be which is why anyone whos at risk should try to make sure that they lose weight.

I do know that medical advice was not meant to be given on this site but I felt this advice could help? I have MS and lymphoedema as well, ankles and feet hot swollen and sore. I am overweight because of steroids. However, Lymphedema can be a symptom of a number of serious things so a. get your doctors advice; devise a program which includes elevating your legs higher than your chest level several times a day. See if you get on with a stepper; that gets your legs pumping blood around well; wear airline support socks or similar support stockings to push away the fluid. Massage your ankles with a nice cream, they must feel right and sore, eh?

Its not a nice condition, but its highly responsive to gentle regular exercise/treatment, but its very easy to lose heart when you've got it. speak to doc!

hrafndot

bertiebat wrote: »

Hi minxwolf,

Well maybe someone who actually suffers from secondary lymphoedema in both arms/chest caused by breast cancer treatment should reply following sunnyone's post. I had no idea that people thought that it's CAUSED by being a 'larger person'. IT IS NOT! It can be helped (NOT cured) with weight loss but that is a completely different matter.

Good Luck!

Bertiebat, as you are a newbie, you may not know about the private message facility its in the user cotrol panel, I have sent you a private message, you may have sent one back but mycontrol panel is acting up so you may need to re-send