Please help our Grandma have treatment
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Grandma has a disease called Lipedema. She has final stage Lipo-lymphedema which is lipedema and lymphedema.
Lipedema is a disorder that causes extreme swelling of her legs and arms due to deposits of abnormal fat beneath the skin. It is diseased fat cells in the body. It usually occurs mostly in women (affecting up to 11% of women). if it is not recognized early, it continues to destroy the lymphatic system. The cause of lipedema is unknown but is thought to be hormonal and hereditary influences. Many people with lipedema have a family history of similarly enlarged legs and arms. Grandma's mother had lipedema and never knew what it was. Everyone just thought it was fat from lack of exercise and diet.
The pain Grandma lives with every day is terrific both physically and emotionally. Her legs and arms are very painful to touch as well and the smallest bump becomes a large bruise. The smallest cut, rash or any change in her skin can mean a deadly infection. Her ability to walk is getting more difficult as her knees, hips and feet are no longer in alignment.
While there is no cure for lipedema, it can be managed but the end result is usually losing the ability to walk and become disabled. No amount of exercise or dieting would reduce the abnormal fat. It can only be controlled.
Canada does not have any specialists to treat lipedema even though this disease has been treated for sixty years in Europe. There are now surgeons in the US who have been trained to remove this diseased tissue with a special type of liposuction so patients can live a near normal life. Canadian doctors know very little about this disease or just ignore it thinking it is just obesity. If it is recognized early, it may never progress past the first stage. Grandma has been very fortunate to have a therapist who recognized the disease and is working very hard to get her the treatment she so desperately needs.
Grandma must wear compression on her legs, arms and abdomen for 23 hours per day. She has special garments that are worn at night to control the swelling and day garments to reduce the swelling. The night garments are quilted and large and cover most of her body. In the event that the swelling becomes severe, she must be wrapped in a special form of foam and bandages. They are used to force the fluid into the lymph nodes at the armpit, groin and abdomen. This is done for both legs and both arms. When the summer temperatures rise, the discomfort for her is terrible. She must stay in an air-conditioned house or the swelling pain is unbearable. The disease causes large painful lipomas which are hardened fibrotic tissue. They cannot be removed as the possibility of cellulitis and possibly death. To be able to bear the pain, a lymph pump must be used for at least one hour per day on her legs and abdomen and then one hour per day on her arms and abdomen.
Sask. Health provides some assistance with paying for garments but they will not pay for any treatment out of country. As there are no specialists in Canada, this creates a major problem.
Due to the late stage of diagnosis, her condition cannot be controlled by usual treatment. Grandma has been referred to a lipedema clinic in Tucson, Arizona to be treated by a world renown lipedema physician Dr. Karen Herbst. The costs are not covered by our health plan so she must pay for all the treatment and tests necessary. The consultation is $1000 US plus travel and all the cost of tests which will run into the thousands. If she does not get treatment now she will no longer be able to walk.
The one treatment that can remove the diseased tissue is a special form of liposuction called WAL or water assisted liposuction. The only surgeons qualified to do this surgery are in Europe or in the US. The costs are roughly $8000 per surgery plus travel, special garments and special travel arrangements as the drainage is a problem for a month or two afterwards. Due to the danger of blood clots, special arrangements must be made in order to travel. She would need at least 6 surgeries so this is far beyond what she can afford. As she is in the final stages, full arms and legs must be drained individually. If it is not done by a qualified surgeon, death could be a result. The surgeons have said as she is in the final stages of lipedema, liposuction may no longer even be an option if it is not done as soon as possible. It is imperative that she have this surgery before the disease destroys the lymphatic system completely.
If it is possible, could you please help our grandma get the treatment she so badly needs. This treatment would mean that she can be able to continue to walk, attend our life events, work in her garden and go to the beach with us. She would be able to do the things that other grandparents can do with their grandchildren. We want her to be at our graduations, weddings and Christmas and all the other times that are so important. While others can wish and pray for a vacation, all my grandma wants is to walk and wear clothes that we all take for granted.
We love our grandma with all our hearts and we so need her to be healthy and to stay in our lives as long as we can have her. Grandma and some other lipedema patients have worked very hard to organize a Saskatchewan Lipedema Association to help support other women who suffer with this disorder and to help people become aware of this terrible disease.
Thank you from the bottom of our hearts.
Taylor, Alexa, Ethan and Carly
Lipedema is a disorder that causes extreme swelling of her legs and arms due to deposits of abnormal fat beneath the skin. It is diseased fat cells in the body. It usually occurs mostly in women (affecting up to 11% of women). if it is not recognized early, it continues to destroy the lymphatic system. The cause of lipedema is unknown but is thought to be hormonal and hereditary influences. Many people with lipedema have a family history of similarly enlarged legs and arms. Grandma's mother had lipedema and never knew what it was. Everyone just thought it was fat from lack of exercise and diet.
The pain Grandma lives with every day is terrific both physically and emotionally. Her legs and arms are very painful to touch as well and the smallest bump becomes a large bruise. The smallest cut, rash or any change in her skin can mean a deadly infection. Her ability to walk is getting more difficult as her knees, hips and feet are no longer in alignment.
While there is no cure for lipedema, it can be managed but the end result is usually losing the ability to walk and become disabled. No amount of exercise or dieting would reduce the abnormal fat. It can only be controlled.
Canada does not have any specialists to treat lipedema even though this disease has been treated for sixty years in Europe. There are now surgeons in the US who have been trained to remove this diseased tissue with a special type of liposuction so patients can live a near normal life. Canadian doctors know very little about this disease or just ignore it thinking it is just obesity. If it is recognized early, it may never progress past the first stage. Grandma has been very fortunate to have a therapist who recognized the disease and is working very hard to get her the treatment she so desperately needs.
Grandma must wear compression on her legs, arms and abdomen for 23 hours per day. She has special garments that are worn at night to control the swelling and day garments to reduce the swelling. The night garments are quilted and large and cover most of her body. In the event that the swelling becomes severe, she must be wrapped in a special form of foam and bandages. They are used to force the fluid into the lymph nodes at the armpit, groin and abdomen. This is done for both legs and both arms. When the summer temperatures rise, the discomfort for her is terrible. She must stay in an air-conditioned house or the swelling pain is unbearable. The disease causes large painful lipomas which are hardened fibrotic tissue. They cannot be removed as the possibility of cellulitis and possibly death. To be able to bear the pain, a lymph pump must be used for at least one hour per day on her legs and abdomen and then one hour per day on her arms and abdomen.
Sask. Health provides some assistance with paying for garments but they will not pay for any treatment out of country. As there are no specialists in Canada, this creates a major problem.
Due to the late stage of diagnosis, her condition cannot be controlled by usual treatment. Grandma has been referred to a lipedema clinic in Tucson, Arizona to be treated by a world renown lipedema physician Dr. Karen Herbst. The costs are not covered by our health plan so she must pay for all the treatment and tests necessary. The consultation is $1000 US plus travel and all the cost of tests which will run into the thousands. If she does not get treatment now she will no longer be able to walk.
The one treatment that can remove the diseased tissue is a special form of liposuction called WAL or water assisted liposuction. The only surgeons qualified to do this surgery are in Europe or in the US. The costs are roughly $8000 per surgery plus travel, special garments and special travel arrangements as the drainage is a problem for a month or two afterwards. Due to the danger of blood clots, special arrangements must be made in order to travel. She would need at least 6 surgeries so this is far beyond what she can afford. As she is in the final stages, full arms and legs must be drained individually. If it is not done by a qualified surgeon, death could be a result. The surgeons have said as she is in the final stages of lipedema, liposuction may no longer even be an option if it is not done as soon as possible. It is imperative that she have this surgery before the disease destroys the lymphatic system completely.
If it is possible, could you please help our grandma get the treatment she so badly needs. This treatment would mean that she can be able to continue to walk, attend our life events, work in her garden and go to the beach with us. She would be able to do the things that other grandparents can do with their grandchildren. We want her to be at our graduations, weddings and Christmas and all the other times that are so important. While others can wish and pray for a vacation, all my grandma wants is to walk and wear clothes that we all take for granted.
We love our grandma with all our hearts and we so need her to be healthy and to stay in our lives as long as we can have her. Grandma and some other lipedema patients have worked very hard to organize a Saskatchewan Lipedema Association to help support other women who suffer with this disorder and to help people become aware of this terrible disease.
Thank you from the bottom of our hearts.
Taylor, Alexa, Ethan and Carly
Organizer
Barbara Knowles
Organizer
South Central Saskatchewan , SK
