Brown & Mazurkewich Medical Fund
Donation protected
Meet the Brown & Mazurkewich family…they may seem like the average, healthy, everyday family but tucked behind those beautiful smiles this family lives in a steady state of fear and medical chaos…
At 3 years of age, Olivia Brown stopped gaining weight and became very ill. It took extensive trips to numerous specialists and travel across Canada and even to the Mayo Clinic in the United States to try and figure out what was happening to their daughter. After a variety of assessments and testing, it was finally determined that the illness Olivia had was related to her genes. As a result, she was diagnosed with Ehlers Danlos Syndrome (EDS) – Hypermobile type as well as Mitochondrial disease. During the discovery of the EDS it was discovered that Marli too has this disease. Recently, Marli has been diagnosed with a second terminal illness – Dercum’s Disease – and has been given a life expectancy of 5 to 7 years. Symptoms of this disease have been described as similar to the progression of ALS. She will become increasingly debilitated and suffer through chronic pain until the end.
Both Marli and Olivia require extensive medications, which are not all covered by any health care plan and both will require equipment to function in their daily lives. Olivia is now 8 years old and the family has struggled for many years trying to pay for the treatment, travel costs, and medication Olivia requires to live. Olivia also requires a daily intake of 4000 to 5000 calories per day in order to avoid being placed on a feeding tube. Neither Marli nor Kerry have benefit plans that allow them to offset some of the costs that have incurred. They have recently had to sell their home at a significantly reduced price, in order to move quickly, and have downsized to a much smaller home to be able to try and stay afloat.
Please help us help this family in need. There is so much sadness and trauma this family is coping with and alleviating some of the financial costs involved is one way we can help make their lives a little bit easier!
Olivia’s Story
VIDEO: “Through the Eyes of a Child: Living with EDS”
Message from the Family
Costs
Each year, we spend anywhere from $15,000-$25,000 on medical care for Olivia. Unfortunately, many things to help with Olivia’s care are not covered, or require cash flow up front to attend and then get a baseline reimbursement after the trip. At this point, because we tried to carry these costs and pay when we can, it is a cumulative effect that has created a mountain. As we have many regular costs (the cost of food alone for that many calories per day is high!), we often do not have the upfront money to take her. Mito Cocktail is $150.00 per month and is not covered by any drug plan. We actually had to give up our medical plan as it barely covered us and the regular costs of things not covered meant that we could no longer afford the payments. Olivia needs to be seen by the pain specialist and attend a program in either Ontario or Nova Scotia, however that is 21 days that we cannot afford the accommodations for (even at a place like Ronald McDonald House). Oliva should also be seeing regular massage, chiropractor, naturopathic doc (they also do acupuncture) – however these are costs that we can’t cover.
Olivia’s care team should include cardiology, gastro-enterology, endocrinology, neurology, rheumatology, physical therapy, occupational therapy, internist, orthotics, orthodontist, and pain management. We have piece mealed what we can in Manitoba, however as Olivia grows and her symptoms increase, her need to see the EDS specialists increases as well.
Impact on Family
Olivia first got seriously sick at the age of 3 years. As we realized that this was not going to be an easy fix, we had many discussions about how time and cost in the medical realm could possibly impact others in the family. Landon is a sporty kid – we knew that the costs to obtain medical care may mean that he may not be able to do everything he wants to. We have been lucky and have found support in family, friends (nothing is better than hotel gift cards that we receive as gifts!), and different programs (like Jumpstart). Many programs are built around lower income; as such, we don’t qualify for many as both Kerry and I work full time. However, as many people know, working full time doesn’t cover everything, and adding a minimum $15,000 of costs per year really stretches an elastic that is already stretched too far. More recently, due to my own physical deterioration, I have been unable to work full time hours as my physical agility is very limited and unpredictable. There are no daily coffee runs, there is no buying fancy food, there is minimal restaurant time. There is bartering of services to try and cover costs, there is getting services cut as couldn’t pay the regular bill, there are long times to pay people back (even when it’s only $40). There are midnight soft cries in the bathroom so no one will hear, there is phone calls of frustration when we encounter a rude doctor, there is a marriage that has crumbled. There are goofy tears of happiness watching them grow, there is teaching them coping techniques, and there are a lot of “I don’t know, but we will always love each other.”
Landon enjoys his hockey and it is very expensive with registration and equipment, but I am fortunate enough that I am able to locate grants to pay for the equipment and registrations so that he can enjoy what he loves to do. It is unfortunate that the grants do not cover travel or hotel costs so at times we have had to sleep in our van in order to be there to support him at his events. Parents have offered to take him but Life is so short and we want to try to be in their lives as long as we can. Much of our time is spent dealing with the illness’s in our home and it’s nice to have some positives to keep us all sane. We try to live our “regular” lives as much as we can to maintain stability, but each one of us has been changed with the knowledge that every moment needs to count . . . . . .
Read further for information about Ehlers Danlos Syndrome, Mitochondrial disease, and Dercum’s:
Ehlers Danlos Syndrome is a genetic condition that affects the collagen in the body. Collagen is considered to be the “glue” that keeps our body together and is found in each body system. Olivia’s impact from EDS is multi-systemic. She experiences daily pain, sometimes minor and other days it is so severe she can’t play. Her gastro issues are one of the most challenging for her – we have to feed her a high calorie diet as she does not absorb nutrients well (we are talking 4,000-5,000 calories a day). She is at high risk of needing a feeding tube in the future due to her high caloric need – she will be placed on one if she is unable to eat as many calories or her absorption gets worse. She has also been diagnosed with gastroparesis (slow stomach emptying) and it is suspected she has mega colon because the collagen is not strong enough to maintain normal shape. We have not (in agreement with her gastro doctor) done scope to find out for sure as the risk of her bowel being punctured during the procedure is very high. Olivia also has severe vascular crossover; this means that the collagen defect has caused her veins and arteries to have “holes” in them. As such, bleed outs can occur and can be as mild as causing a benign bruise or all the way to an aortic tear, which will kill her immediately.
Olivia is suspected to have a Chiari Malformation and/or tethered cord – these two things cause her to have many neuro symptoms like falling unconscious, making people sound like “chipmunks”, and severe clumsiness. These symptoms are transient as the hypermobility causes her spine and neck to move around frequently – this transience makes it hard to treat. Over time, these will become less transient and more permanent, and possibly remain permanently damaged. The only physicians that have knowledge in EDS are in Toronto and the United States. There is one neurosurgeon in Toronto that has just started to provide tethered cord surgery in people with EDS, and he is being mentored by two neurosurgeons in the US that truly specialize in EDS. They are developing a physician based Center of Excellence in Toronto, and Olivia’s file will be centered there once they start taking out of province referrals. We do not know when this will happen. There is a geneticist in Calgary that she sees every two years, but he does not manage treatment. This year we had to cancel the appointment due to the cost.
Mitochondrial disease is a chronic disorder that occurs when the mitochondrial of the cell fails to produce enough energy for cell and/or organ function. Many of the symptoms of mito disease are similar to symptoms in EDS, and this complicates Olivia’s case further. It is hard to find specialists that have knowledge in both areas to be sure that intervention doesn’t make the other worse. For Olivia, mito disease is extremely dangerous as when her body signals to make more fuel, her mitochondria (which are already working overtime) pump up production. In order to do that, they pull energy from other places – for Olivia, that has been her kidneys, liver, and her brain. If that process is not stopped, she will experience organ failure, permanent damage, and/or death.
The things that can trigger this process range from the benign to serious:
Physical Exertion (including bathing, eating, playing, sports, etc)
Negative Moods
Temperature extremes (especially shivering)
Infections
Olivia has already experienced at least 3 “mito crisis”. This was prior to her getting a diagnosis so we had no idea what was happening and the specialists in Manitoba couldn’t explain what was happening. Thankfully, she had some angels on her side and she recovered. We structure her day carefully to help with prevention.
We have been told that Olivia will not live a long life as the risk of dying from one or the other is high. That is why prevention has become so important to us. She is lucky in the sense that she can lead a fairly “normal” life with many plans in place – we have come to accept that when her time comes, it will be quick. She will either bleed out from a vascular tear (due to EDS), or she will experience organ failure (due to mito disease). Both will happen quickly. That is extraordinarily difficult to live with. This is why we focus so much on prevention.
Treatment
First, there is no cure for either EDS or mito disease, there is only management. They are also considered to be “rare” (which research is slowly showing that they may not be as rare as once thought) – as such, many medical professionals do not know how to treat them. We have consulted with two specialists in the states (including Mayo Clinic), a geneticist in Calgary, a pain specialist in Nova Scotia, and a geneticist and neurologist in Toronto. We have had to pay privately for all of these appointments as the red tape in Manitoba Health is very thick to get coverage out of province. Normally, a pain management doctor is the case manager for children with EDS, but as we cannot afford to go to where there is an EDS/Mito savvy doctor, Olivia is at risk of falling through the cracks. So many of the regular things she needs to have improved quality of life are not covered.
We are lucky that we have found an orthotist in Brandon, MB that has worked with EDS before so she fits Olivia’s body braces. Olivia is on a daily mito cocktail, which includes vitamins and enzymes that help her mitochondria work more efficiently so they don’t start pulling energy from her organs. The Dauphin Clinic Pharmacy has been amazing and has created a compound liquid so Olivia can take it more easily than the 20 pills a day it would be otherwise. We have worked closely with Naturopathic Doctors to help keep Olivia’s immune system strong in order to keep her mito in a relaxed state. We have found an EDS knowledgeable yoga instructor who does therapeutic yoga (we call it backwards yoga as it teaches her hypermobile joints where to stop instead of over flexing).
Dercum’s Disease
Dercum's disease is an extremely rare disorder characterized by multiple, painful growths consisting of fatty tissue (lipomas). These growths mainly occur on the trunk, the upper arms and upper legs and are found just below the skin (subcutaneously). Growths located on the spine and brain stem are known to be fatal. Currently Marli has growths located around her pelvis, brain stem and spine.
Severe Chronic Pain is associated with Dercum's. Pain may be caused by these growths pressing on nearby nerves. Dercum's disease mainly occurs in adults and more women are affected than men. In some cases, affected individuals may also experience weight gain, depression, lethargy, and/or confusion. The exact cause of Dercum's disease is unknown.
The associated symptoms in Dercum's disease include fatty deposits, easy bruisability, sleep disturbances, impaired memory, depression, difficulty concentrating, anxiety, rapid heartbeat, shortness of breath, diabetes, bloating, constipation, fatigue, weakness and joint aches.
Traditional management of Dercum disease has been largely unsatisfactory relying on weight reduction and surgical excision of particularly troublesome lesions. Even at the present time, no known drug can change the course of the disease, and available treatments are only symptomatic. Due to EDS Marli cannot undergo surgery.
Nonpharmacological approaches for Dercum disease may be used as adjuncts to pharmacologic treatments. Some of these include acupuncture, cognitive behavioral therapy, hypnosis, and biofeedback, which are very costly.
Other treatments include:
Lidocaine Injections
A few patients report temporary pain relief with the IV administration of lidocaine, although this method is disputed due to the complications of repeated use. However, this is only a temporary solution, as it will only mask the symptoms without addressing the root cause of the patient's pain.
Liposuction
The one most successful treatment to address the root cause of the symptoms of Dercum's Disease is liposuction. When the abnormal Dercums fat has been removed via liposuction, patients report that many of their symptoms subside greatly and for a prolonged period of time, thus dramatically increasing the quality of life. Thus far it has been found that once the abnormal fat cells associated with Dercum's Disease are removed, the localized tenderness and pain is greatly reduced, and the myriad of other detrimental symptoms associated with this disease are also lessened.
Lipoma Removal
It is highly recommended that painful and pressing lipomas that may develop be surgically removed, especially if they are causing tingling or numbness.
CVAC Process
The CVAC process is natural and non-invasive and delivered via a single-occupant altitude simulator. A CVAC session is expected to provide exercise for the entire body without the effort of exercise. The CVAC machine is expensive and is not covered by insurance because the treatment is currently considered experimental. For an hour she’ll sit inside this fiberglass egg, the pod, a super-rapid alternating-barometric-pressure chamber, improves the quality of life of patients suffering from Dercums.
“COSTS AT A GLANCE”
Below is a list of equipment and treatment requirements needed for this family to give you an idea of the kind of costs they are facing…
Wheel chair for Olivia CA$2,260.00
Wheel Chair for Marli CA$3,045.00
Lift for their van CA$56,995.00 (Plus Taxes & Licensing)
Mechanical bed for Marli CA$2,378.98
Bars for Bathroom CA$165.00
Walk in Bath tub CA$3,999.99
Total: CA$65,243.90 plus taxes and shipping
Ongoing costs:
Marli and Olivia would need to see the Naturopath in Dauphin for Acupuncture 2-3 times a week at $65/ appointment as that is another suggestion to help manage the pain. $390.00/week x 52 weeks = $20,280.00
Olivia would need to continue seeing Lisa at Tamarack Yoga $60/ session 2 times a week to help with her disease $120.00 / week x 52 weeks = $6240.00
Olivia’s mitochondrial cocktail $150/month x 12 = $1800.00
Marli’s medications not covered by Medicare (varies from $100-$300/month) x 12 = $1200.00 -$3600.00
Olivia’s trips to Calgary, Brandon and Winnipeg for specialists appointments. (Airfare $440 x 2) + (hotel $150 x 2) = $1180.00 x 4 times per year = $4720.00
CVAC Process for Marli’s Dercums : Assessment USD $750 /90 minutes, CVAC POD $1 /minute.
Usual times are a single session of 20 minutes; many undergo two sessions for a total of 40 minutes x 7 days = USD $280.00
Total CVAC cost =USD $1030.00 plus airfare and accommodations
At 3 years of age, Olivia Brown stopped gaining weight and became very ill. It took extensive trips to numerous specialists and travel across Canada and even to the Mayo Clinic in the United States to try and figure out what was happening to their daughter. After a variety of assessments and testing, it was finally determined that the illness Olivia had was related to her genes. As a result, she was diagnosed with Ehlers Danlos Syndrome (EDS) – Hypermobile type as well as Mitochondrial disease. During the discovery of the EDS it was discovered that Marli too has this disease. Recently, Marli has been diagnosed with a second terminal illness – Dercum’s Disease – and has been given a life expectancy of 5 to 7 years. Symptoms of this disease have been described as similar to the progression of ALS. She will become increasingly debilitated and suffer through chronic pain until the end.
Both Marli and Olivia require extensive medications, which are not all covered by any health care plan and both will require equipment to function in their daily lives. Olivia is now 8 years old and the family has struggled for many years trying to pay for the treatment, travel costs, and medication Olivia requires to live. Olivia also requires a daily intake of 4000 to 5000 calories per day in order to avoid being placed on a feeding tube. Neither Marli nor Kerry have benefit plans that allow them to offset some of the costs that have incurred. They have recently had to sell their home at a significantly reduced price, in order to move quickly, and have downsized to a much smaller home to be able to try and stay afloat.
Please help us help this family in need. There is so much sadness and trauma this family is coping with and alleviating some of the financial costs involved is one way we can help make their lives a little bit easier!
Olivia’s Story
VIDEO: “Through the Eyes of a Child: Living with EDS”
Message from the Family
Costs
Each year, we spend anywhere from $15,000-$25,000 on medical care for Olivia. Unfortunately, many things to help with Olivia’s care are not covered, or require cash flow up front to attend and then get a baseline reimbursement after the trip. At this point, because we tried to carry these costs and pay when we can, it is a cumulative effect that has created a mountain. As we have many regular costs (the cost of food alone for that many calories per day is high!), we often do not have the upfront money to take her. Mito Cocktail is $150.00 per month and is not covered by any drug plan. We actually had to give up our medical plan as it barely covered us and the regular costs of things not covered meant that we could no longer afford the payments. Olivia needs to be seen by the pain specialist and attend a program in either Ontario or Nova Scotia, however that is 21 days that we cannot afford the accommodations for (even at a place like Ronald McDonald House). Oliva should also be seeing regular massage, chiropractor, naturopathic doc (they also do acupuncture) – however these are costs that we can’t cover.
Olivia’s care team should include cardiology, gastro-enterology, endocrinology, neurology, rheumatology, physical therapy, occupational therapy, internist, orthotics, orthodontist, and pain management. We have piece mealed what we can in Manitoba, however as Olivia grows and her symptoms increase, her need to see the EDS specialists increases as well.
Impact on Family
Olivia first got seriously sick at the age of 3 years. As we realized that this was not going to be an easy fix, we had many discussions about how time and cost in the medical realm could possibly impact others in the family. Landon is a sporty kid – we knew that the costs to obtain medical care may mean that he may not be able to do everything he wants to. We have been lucky and have found support in family, friends (nothing is better than hotel gift cards that we receive as gifts!), and different programs (like Jumpstart). Many programs are built around lower income; as such, we don’t qualify for many as both Kerry and I work full time. However, as many people know, working full time doesn’t cover everything, and adding a minimum $15,000 of costs per year really stretches an elastic that is already stretched too far. More recently, due to my own physical deterioration, I have been unable to work full time hours as my physical agility is very limited and unpredictable. There are no daily coffee runs, there is no buying fancy food, there is minimal restaurant time. There is bartering of services to try and cover costs, there is getting services cut as couldn’t pay the regular bill, there are long times to pay people back (even when it’s only $40). There are midnight soft cries in the bathroom so no one will hear, there is phone calls of frustration when we encounter a rude doctor, there is a marriage that has crumbled. There are goofy tears of happiness watching them grow, there is teaching them coping techniques, and there are a lot of “I don’t know, but we will always love each other.”
Landon enjoys his hockey and it is very expensive with registration and equipment, but I am fortunate enough that I am able to locate grants to pay for the equipment and registrations so that he can enjoy what he loves to do. It is unfortunate that the grants do not cover travel or hotel costs so at times we have had to sleep in our van in order to be there to support him at his events. Parents have offered to take him but Life is so short and we want to try to be in their lives as long as we can. Much of our time is spent dealing with the illness’s in our home and it’s nice to have some positives to keep us all sane. We try to live our “regular” lives as much as we can to maintain stability, but each one of us has been changed with the knowledge that every moment needs to count . . . . . .
Read further for information about Ehlers Danlos Syndrome, Mitochondrial disease, and Dercum’s:
Ehlers Danlos Syndrome is a genetic condition that affects the collagen in the body. Collagen is considered to be the “glue” that keeps our body together and is found in each body system. Olivia’s impact from EDS is multi-systemic. She experiences daily pain, sometimes minor and other days it is so severe she can’t play. Her gastro issues are one of the most challenging for her – we have to feed her a high calorie diet as she does not absorb nutrients well (we are talking 4,000-5,000 calories a day). She is at high risk of needing a feeding tube in the future due to her high caloric need – she will be placed on one if she is unable to eat as many calories or her absorption gets worse. She has also been diagnosed with gastroparesis (slow stomach emptying) and it is suspected she has mega colon because the collagen is not strong enough to maintain normal shape. We have not (in agreement with her gastro doctor) done scope to find out for sure as the risk of her bowel being punctured during the procedure is very high. Olivia also has severe vascular crossover; this means that the collagen defect has caused her veins and arteries to have “holes” in them. As such, bleed outs can occur and can be as mild as causing a benign bruise or all the way to an aortic tear, which will kill her immediately.
Olivia is suspected to have a Chiari Malformation and/or tethered cord – these two things cause her to have many neuro symptoms like falling unconscious, making people sound like “chipmunks”, and severe clumsiness. These symptoms are transient as the hypermobility causes her spine and neck to move around frequently – this transience makes it hard to treat. Over time, these will become less transient and more permanent, and possibly remain permanently damaged. The only physicians that have knowledge in EDS are in Toronto and the United States. There is one neurosurgeon in Toronto that has just started to provide tethered cord surgery in people with EDS, and he is being mentored by two neurosurgeons in the US that truly specialize in EDS. They are developing a physician based Center of Excellence in Toronto, and Olivia’s file will be centered there once they start taking out of province referrals. We do not know when this will happen. There is a geneticist in Calgary that she sees every two years, but he does not manage treatment. This year we had to cancel the appointment due to the cost.
Mitochondrial disease is a chronic disorder that occurs when the mitochondrial of the cell fails to produce enough energy for cell and/or organ function. Many of the symptoms of mito disease are similar to symptoms in EDS, and this complicates Olivia’s case further. It is hard to find specialists that have knowledge in both areas to be sure that intervention doesn’t make the other worse. For Olivia, mito disease is extremely dangerous as when her body signals to make more fuel, her mitochondria (which are already working overtime) pump up production. In order to do that, they pull energy from other places – for Olivia, that has been her kidneys, liver, and her brain. If that process is not stopped, she will experience organ failure, permanent damage, and/or death.
The things that can trigger this process range from the benign to serious:
Physical Exertion (including bathing, eating, playing, sports, etc)
Negative Moods
Temperature extremes (especially shivering)
Infections
Olivia has already experienced at least 3 “mito crisis”. This was prior to her getting a diagnosis so we had no idea what was happening and the specialists in Manitoba couldn’t explain what was happening. Thankfully, she had some angels on her side and she recovered. We structure her day carefully to help with prevention.
We have been told that Olivia will not live a long life as the risk of dying from one or the other is high. That is why prevention has become so important to us. She is lucky in the sense that she can lead a fairly “normal” life with many plans in place – we have come to accept that when her time comes, it will be quick. She will either bleed out from a vascular tear (due to EDS), or she will experience organ failure (due to mito disease). Both will happen quickly. That is extraordinarily difficult to live with. This is why we focus so much on prevention.
Treatment
First, there is no cure for either EDS or mito disease, there is only management. They are also considered to be “rare” (which research is slowly showing that they may not be as rare as once thought) – as such, many medical professionals do not know how to treat them. We have consulted with two specialists in the states (including Mayo Clinic), a geneticist in Calgary, a pain specialist in Nova Scotia, and a geneticist and neurologist in Toronto. We have had to pay privately for all of these appointments as the red tape in Manitoba Health is very thick to get coverage out of province. Normally, a pain management doctor is the case manager for children with EDS, but as we cannot afford to go to where there is an EDS/Mito savvy doctor, Olivia is at risk of falling through the cracks. So many of the regular things she needs to have improved quality of life are not covered.
We are lucky that we have found an orthotist in Brandon, MB that has worked with EDS before so she fits Olivia’s body braces. Olivia is on a daily mito cocktail, which includes vitamins and enzymes that help her mitochondria work more efficiently so they don’t start pulling energy from her organs. The Dauphin Clinic Pharmacy has been amazing and has created a compound liquid so Olivia can take it more easily than the 20 pills a day it would be otherwise. We have worked closely with Naturopathic Doctors to help keep Olivia’s immune system strong in order to keep her mito in a relaxed state. We have found an EDS knowledgeable yoga instructor who does therapeutic yoga (we call it backwards yoga as it teaches her hypermobile joints where to stop instead of over flexing).
Dercum’s Disease
Dercum's disease is an extremely rare disorder characterized by multiple, painful growths consisting of fatty tissue (lipomas). These growths mainly occur on the trunk, the upper arms and upper legs and are found just below the skin (subcutaneously). Growths located on the spine and brain stem are known to be fatal. Currently Marli has growths located around her pelvis, brain stem and spine.
Severe Chronic Pain is associated with Dercum's. Pain may be caused by these growths pressing on nearby nerves. Dercum's disease mainly occurs in adults and more women are affected than men. In some cases, affected individuals may also experience weight gain, depression, lethargy, and/or confusion. The exact cause of Dercum's disease is unknown.
The associated symptoms in Dercum's disease include fatty deposits, easy bruisability, sleep disturbances, impaired memory, depression, difficulty concentrating, anxiety, rapid heartbeat, shortness of breath, diabetes, bloating, constipation, fatigue, weakness and joint aches.
Traditional management of Dercum disease has been largely unsatisfactory relying on weight reduction and surgical excision of particularly troublesome lesions. Even at the present time, no known drug can change the course of the disease, and available treatments are only symptomatic. Due to EDS Marli cannot undergo surgery.
Nonpharmacological approaches for Dercum disease may be used as adjuncts to pharmacologic treatments. Some of these include acupuncture, cognitive behavioral therapy, hypnosis, and biofeedback, which are very costly.
Other treatments include:
Lidocaine Injections
A few patients report temporary pain relief with the IV administration of lidocaine, although this method is disputed due to the complications of repeated use. However, this is only a temporary solution, as it will only mask the symptoms without addressing the root cause of the patient's pain.
Liposuction
The one most successful treatment to address the root cause of the symptoms of Dercum's Disease is liposuction. When the abnormal Dercums fat has been removed via liposuction, patients report that many of their symptoms subside greatly and for a prolonged period of time, thus dramatically increasing the quality of life. Thus far it has been found that once the abnormal fat cells associated with Dercum's Disease are removed, the localized tenderness and pain is greatly reduced, and the myriad of other detrimental symptoms associated with this disease are also lessened.
Lipoma Removal
It is highly recommended that painful and pressing lipomas that may develop be surgically removed, especially if they are causing tingling or numbness.
CVAC Process
The CVAC process is natural and non-invasive and delivered via a single-occupant altitude simulator. A CVAC session is expected to provide exercise for the entire body without the effort of exercise. The CVAC machine is expensive and is not covered by insurance because the treatment is currently considered experimental. For an hour she’ll sit inside this fiberglass egg, the pod, a super-rapid alternating-barometric-pressure chamber, improves the quality of life of patients suffering from Dercums.
“COSTS AT A GLANCE”
Below is a list of equipment and treatment requirements needed for this family to give you an idea of the kind of costs they are facing…
Wheel chair for Olivia CA$2,260.00
Wheel Chair for Marli CA$3,045.00
Lift for their van CA$56,995.00 (Plus Taxes & Licensing)
Mechanical bed for Marli CA$2,378.98
Bars for Bathroom CA$165.00
Walk in Bath tub CA$3,999.99
Total: CA$65,243.90 plus taxes and shipping
Ongoing costs:
Marli and Olivia would need to see the Naturopath in Dauphin for Acupuncture 2-3 times a week at $65/ appointment as that is another suggestion to help manage the pain. $390.00/week x 52 weeks = $20,280.00
Olivia would need to continue seeing Lisa at Tamarack Yoga $60/ session 2 times a week to help with her disease $120.00 / week x 52 weeks = $6240.00
Olivia’s mitochondrial cocktail $150/month x 12 = $1800.00
Marli’s medications not covered by Medicare (varies from $100-$300/month) x 12 = $1200.00 -$3600.00
Olivia’s trips to Calgary, Brandon and Winnipeg for specialists appointments. (Airfare $440 x 2) + (hotel $150 x 2) = $1180.00 x 4 times per year = $4720.00
CVAC Process for Marli’s Dercums : Assessment USD $750 /90 minutes, CVAC POD $1 /minute.
Usual times are a single session of 20 minutes; many undergo two sessions for a total of 40 minutes x 7 days = USD $280.00
Total CVAC cost =USD $1030.00 plus airfare and accommodations
Organizer
Colette Foidart
Organizer
Dauphin, MB