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My little sister and BEST FRIEND is fighting the "Battle of her Life". She has been there for myself and my family in more ways than I can share on here. Although all 5 of her siblings and numerous Nieces and Nephews would, with JOY in their hearts, step up to donate a kidney if it comes to that, we are "Storming Heaven" and asking for assistance to avoid that. Pam Sinclair is one of the strongest, kindest, most loving Mother's, Auntie's, and Sister's and Friends that a family could hope to have. She seldom complains but faces each hurdle she has encountered with Faith and Determination. Please read below...though I am not that knowledgeable about this disease (have a hard time pronouncing it!) I can tell you that her three beautiful kids; Ben, Amy and Jesse still need her...as do we all.
Diagnosed on May 6th, 2009 with Primary Focal Segmental Glomerulosclerosis (FSGS). This disease is usually seen in people with high blood pressure +/- Diabetes. Not true in this case, it is considered "primary" meaning it is an autoimmune disorder. I showed no symptoms except for an elevated protein in the urine. High normal is 1.5g....mine was over 7g. The body is slowly attacking the kidneys and making them hard. I have 70% of my kidneys affected by this. Started treatment in 2009 with high dose steroids which put me into a remission after 8 months. Stayed in remission for a few years...it returned 2 years ago and was again put on steroids. This no longer was enough. The doctor had to add a drug that is usually given to patients after a transplant in hopes of suppressing the immune system to get back into remission. This worked for a while and then the protein started to climb again. In the summer of 2014, the doctor changed from regular daily use of steroids to high dose steroids and changed the post-transplant drug to another one, in hopes of achieving even a partial remission. Again..it worked but now the steroids were taking their toll and causing unwanted side effects. Dosing was cut back to once a month. I am now considered high-dose steroid dependent as of January 2015. Despite cutting back to once a month steroid use and twice a day dose of Cellcept, the protein continues to climb. That therapy was the last known proven method to control this disease. I now have the option of undergoing an investigational treatment that has shown very positive results. The treatment is a chemotherapy drug called Rituximab. It's job is to completely suppress the immune system to stop the attack on the kidneys. If this does not work, then the only option is to wait and treat symptoms of renal failure until the point is reached that I need a transplant.
The cost of this treatment is targeted at approximately $2000.00 per week for six weeks! We in Canada should have a deeper appreciation of our Healthcare System. I am humbly asking for any help that any of you are able to share.
Thank you and God Bless!
Diagnosed on May 6th, 2009 with Primary Focal Segmental Glomerulosclerosis (FSGS). This disease is usually seen in people with high blood pressure +/- Diabetes. Not true in this case, it is considered "primary" meaning it is an autoimmune disorder. I showed no symptoms except for an elevated protein in the urine. High normal is 1.5g....mine was over 7g. The body is slowly attacking the kidneys and making them hard. I have 70% of my kidneys affected by this. Started treatment in 2009 with high dose steroids which put me into a remission after 8 months. Stayed in remission for a few years...it returned 2 years ago and was again put on steroids. This no longer was enough. The doctor had to add a drug that is usually given to patients after a transplant in hopes of suppressing the immune system to get back into remission. This worked for a while and then the protein started to climb again. In the summer of 2014, the doctor changed from regular daily use of steroids to high dose steroids and changed the post-transplant drug to another one, in hopes of achieving even a partial remission. Again..it worked but now the steroids were taking their toll and causing unwanted side effects. Dosing was cut back to once a month. I am now considered high-dose steroid dependent as of January 2015. Despite cutting back to once a month steroid use and twice a day dose of Cellcept, the protein continues to climb. That therapy was the last known proven method to control this disease. I now have the option of undergoing an investigational treatment that has shown very positive results. The treatment is a chemotherapy drug called Rituximab. It's job is to completely suppress the immune system to stop the attack on the kidneys. If this does not work, then the only option is to wait and treat symptoms of renal failure until the point is reached that I need a transplant.
The cost of this treatment is targeted at approximately $2000.00 per week for six weeks! We in Canada should have a deeper appreciation of our Healthcare System. I am humbly asking for any help that any of you are able to share.
Thank you and God Bless!