
Coping with Cadasil
Donation protected
This Go Fund Me account has been created to support Brian Kniskern through his treatment for what his physician is diagnosing as CADASIL.
Cerebral - brain Autosomal
Dominant – pattern of inheritance
Arteriopathy – disorder of blood vessels Subcortical - below surface of brain Infarcts – type of small strokes Leukoencephalopathy - destruction of white matter.
CADASIL is a genetic disease caused by a defect in one of the proteins that regulates the kinds of tissue found in blood vessels. As a result of this defect, cells in the smooth muscles change, being replaced by connective tissue that is thick and rigid. This results in a decreased blood flow to organs .While CADSIL can affect all arteriole walls, it particularly affects those in the white and gray matter of the brain, resulting in strokes and other defects. In simple explanation it is known as physical shrinking of the brain, and the health effects as a result are a domino effect within the body.
Unfortunately at this time, there is no treatment to prevent the course of CADASIL. Symptoms such as migraines and strokes are treated as they appear. Mental and behavior disorders, loss of swallowing, urin incontenance and alsheimers and the list goes on. Long term care for decrease in cognitive function/dementia, need to be supported as well.
Brian and his wife Brenda and family are coping with this diagnosis, as its affects are overwhelming! financially emotionally and the down right change in quality of life itself for Brian, now being so limited in his day to day abilities. The syndrome itself varies in those effected from minimal onset to the most severe, according to Dr's. Brian is considerably effected moderately to severe, the disease presents itself the most under stress, which as Brians brain changes and the disconnect from how things were prior to the disease presenting itself over the years with age actually increases. The symptoms and problems having good and bad days and the inevitable irreversible changes. The cost for treatments and therapies are immense considering there is no true treatment for the syndrome/ disease accept treatment of the horrific health issues that arise as a result of the syndrome, the "symptoms".
Brian is such a kind, sensitive man, a dad and grandpa as well as a loving husband who is trying best to “keep his chin up” but this is getting harder to deal with as his understanding, and emotional well being and coping are reduced and effected as the progression of cadisil takes place. To be able to help Brian and family by relieving some of the financial burden that is at hand and are now faced with would mean so much. Cadasil can be detected early on but unfortunately for Brian according to dr's he is significantly into the progression of the disease. Had there of been a diagnosis when all of the symptoms started many years ago, the family may have had a chance to create provision to deal with what is at hand and coming. Brian cannot work or drive and the significant change in income even with assistnance, has left this family with some very real issues. Brian resides with his wife and step daughter and grandchildren.. over the years with no idea of what was going on medically this diagnosis has left little to get by. We believe as a family that all things happen for a reason and that ultimately good can come of this, bringing the family closer putting life into perspective and really counting the blessings amongst the challlenges. We are eternally thankful and pray for those who contribute out of the kindness of there heart but most of all the other families who are grately effected and coping as well. You can go on a handful of websites and youtube to hear testimonials of those who cope with this tragic syndrome/disease. Again thank you and be blessed! More about cadasil Genetics related information
Cerebral - brain Autosomal
Dominant – pattern of inheritance
Arteriopathy – disorder of blood vessels Subcortical - below surface of brain Infarcts – type of small strokes Leukoencephalopathy - destruction of white matter.
CADASIL is a genetic disease caused by a defect in one of the proteins that regulates the kinds of tissue found in blood vessels. As a result of this defect, cells in the smooth muscles change, being replaced by connective tissue that is thick and rigid. This results in a decreased blood flow to organs .While CADSIL can affect all arteriole walls, it particularly affects those in the white and gray matter of the brain, resulting in strokes and other defects. In simple explanation it is known as physical shrinking of the brain, and the health effects as a result are a domino effect within the body.
Unfortunately at this time, there is no treatment to prevent the course of CADASIL. Symptoms such as migraines and strokes are treated as they appear. Mental and behavior disorders, loss of swallowing, urin incontenance and alsheimers and the list goes on. Long term care for decrease in cognitive function/dementia, need to be supported as well.
Brian and his wife Brenda and family are coping with this diagnosis, as its affects are overwhelming! financially emotionally and the down right change in quality of life itself for Brian, now being so limited in his day to day abilities. The syndrome itself varies in those effected from minimal onset to the most severe, according to Dr's. Brian is considerably effected moderately to severe, the disease presents itself the most under stress, which as Brians brain changes and the disconnect from how things were prior to the disease presenting itself over the years with age actually increases. The symptoms and problems having good and bad days and the inevitable irreversible changes. The cost for treatments and therapies are immense considering there is no true treatment for the syndrome/ disease accept treatment of the horrific health issues that arise as a result of the syndrome, the "symptoms".
Brian is such a kind, sensitive man, a dad and grandpa as well as a loving husband who is trying best to “keep his chin up” but this is getting harder to deal with as his understanding, and emotional well being and coping are reduced and effected as the progression of cadisil takes place. To be able to help Brian and family by relieving some of the financial burden that is at hand and are now faced with would mean so much. Cadasil can be detected early on but unfortunately for Brian according to dr's he is significantly into the progression of the disease. Had there of been a diagnosis when all of the symptoms started many years ago, the family may have had a chance to create provision to deal with what is at hand and coming. Brian cannot work or drive and the significant change in income even with assistnance, has left this family with some very real issues. Brian resides with his wife and step daughter and grandchildren.. over the years with no idea of what was going on medically this diagnosis has left little to get by. We believe as a family that all things happen for a reason and that ultimately good can come of this, bringing the family closer putting life into perspective and really counting the blessings amongst the challlenges. We are eternally thankful and pray for those who contribute out of the kindness of there heart but most of all the other families who are grately effected and coping as well. You can go on a handful of websites and youtube to hear testimonials of those who cope with this tragic syndrome/disease. Again thank you and be blessed! More about cadasil Genetics related information
Organizer and beneficiary
Jennifer Nicole
Organizer
Schenectady, NY
Brenda Kniskern
Beneficiary