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Interested in talking with other people who have this type of Amyloidosis. I received a liver transplant in 1997 at the Mayo Clinic. Also interested in new research and the development of pharmaceutical drugs for the treatment of amyloidosis.
Polyneuropathy Cancer Heart failure Pain Liver cancer Liver transplant Amyloidosis
Hi Ron,
My name is Bill Hanshaw and I was diagnosed with Familial Amyloidosis in May of 2007. I was on the Mayo transplant list for a year waiting for a heart/liver but
I wasn't selected and moved back to my home in Tallmadge Ohio.
I am currently enrolled in a clinical trial at Johns Hopkins hospital in Baltimore Md. for a new drug they are testing.
My strain is TTR 60 ALA usually found in people of Irish ancestorary.
I am sorry to hear that you were not able to get a transplant. Are you still on the list? How has your general health been? My biggest problem was the neuropathy, terrible feet pain and I had no energy. The doctors weren't even sure if after the transplant if the pain would go away, and thank God it did. Of course I had never even heard of amyloidois before my diagnosis, and during my pre-transplant work up I met 2 other people that had familial amyloidosis. Have any other family members been diagnosed? Do you know what type of medication you are on, or is it a blind study? How long have you been on it? And have you noticed any improvement?
I am currently on the inactive list while I participate in the Fx1006A study. The study is open label with all 10 people receiving the study medication. I will have been in the study 6 months, May 5th.
I go back to Johns Hopkins May 6 and 7 for my 6 month check up. Will know more then.
The results of the first study involving people with the Met 30 series will be released this summer.
I have a total of seven in my family and five have checked positive for the defective gene.
A bad Heart and leg neuropathy are my two main issues with lesser involvement in other areas of my body. The study medication has eliminated the neuropathy pain but hasn't stopped the progression.
My husband passed away at the age of 36 from a type of amyloidosis, which we are still in the process of figuring out which type, on Feb. 28, 2009. It is taking awhile as his went undetected until an autopsy was preformed. He had been having health problems for the past 3 years but they just told us different things and tried different meds and different tests. He really was relatively healthy all things considered. He was hospitalized for 11 days in Jan. and had a pacemaker/defibrillator device put in which ended up not being necessary for his heart problem. His passing was very sudden and not expected. Any way, since we are still waiting for the results, what testing did your family members have to detect the gene? We have 2 young sons and I'm hopeful that he had the primary type but I know its possible that he had your type. Thanks for any info you can share.
Kellie
Kellie,
I am very sorry to hear about the loss of your husband.
You are asking all the right questions and should be concerned about your children.
My familys genetic testing was done by Dr. Merrill Benson at Indiana University. Muriel has posted his E-Mail address on this web site.
The Primary type of Amyloidosis is more aggressive than the Familial type but both have the same end result. Sudden death due to heart failure is common with this disease.
Wait for the final results and then you can make an informed decision.
Take care
Bill Hanshaw
Bill,
I am an only child and my mother was an only child. My mother died at age 77 from liver cancer 6 months after my transplant. I had her tested and she did carry the gene, but she never did exhibit any of the symptoms. I have 2 adult aged children but they have not been tested. As they get older I am more concerned with research that is being done in hopes for a cure for this disease or at least to slow the progression of it.
Ron,
The women in my family who have the defective gene do not start showing symptons as early as the men. The men start in their early fifties and the women in their early seventies.
Where did your mother get the gene from ? How far back can you trace your familys Genetic involvement ?
The disease in my family can be traced back five generations to my great grand mother.
How are you doing after your transplant?
Fold RX has indicated this new drug will be on the market in 2010 if the trials are successful.
Take care
Bill
Bill, Both of my grandparents on my mothers side died before I was born. They were not from this area, and being my mother was an only child, I have no knowledge of genetic history.
I have been doing pretty good with the transplant but I have had a few problems with what I believe is side effects from the medication. I developed migraines and have had alot of stomach problems. After my yearly visit last month, they reduced my medication to the lowest dose I have ever taken, and so far I have been doing better.
Hi!
I am 25 years old, a girl from Cyprus and a few months ago I was diagnosed in carrying the gene of TTR FAMILIAL AMYLOIDOSIS, which I inheritated from my mother and my mother from her mother.
Unfortunately, my grandmother died at her 70 a few days ago from this disease...
My mother is 45 and she is fine for the moment.
For any news on this important issue please let me know!
Thanks in advance.
Regards,
Hara
Hi B. Hanshaw,Ron, and others re: Familial Amyloidosis Polyneuropathy.
My Husband is also a Bill (Fox) and we have been on a long journey. Strugleing for 3 1/2 years to finally getting a diagnosis but a wrong diagnosis. We are also originally from Ohio but now in Tennessee. His mutation is L58H
and final diagnosis from Cleveland Clinic about 10 months ago. Then to Mayo Clinic , lots of tests but nothing for us. The genetic Dr. said to keeping looking for a trial. Once closed and then open again we also found John Hopkins and will have his 6 month visit end of July. Bill Hanshaw you mentioned you are in the trial also. Where did you go for signing up for transplant. We were told husband too old (66) at Mayo., so this is our only hope. Our kids live in Ohio also. I grew up in Akron and we lived in Wadsworth and Medina. How far to go to Dr. in Indiana from Wadsworth or Columbus. When first married we rented in Tallmadge. Very familiar with area.What is the cost and how can we safeguard children from being discriminated if they have the gene? He was the Doctor that did a study on my husbands uncle who died of fam. amy. His mother had the gene but died prior to getting symptoms. The bill that Bush signed will not be completely done until sometime in Nov.
Buy the way my husband was the tenth person to get on the trial by my luckly finding it open again. We are so greatful!!!
Like to hear from you
Joan
Hi joan45,
Give my regards to your husband.
I was listed at both the Cleveland clinic and the Mayo clinic for a Heart/Liver transplant but after waiting a year I decided to enter the study at Johns Hopkins.
The driving time from Akron to Indianapolis is 5 hours and from colombus it is 3 hours.
My entire family has been checked and all with the mutant gene have been identified. That includes siblings and their children.
I am sure Dr. Benson would be very interested in hearing from your husband since he did the initial workup on his uncle.
Keep in touch
Bill H
After your transplant, was there any recovery of damaged nerves/muscles?
I encourage all familial to get in touch with Dr. John Berk of Boston as he has some new trials and is very active in familial amyloidosis along with Dr. Skinner.
jberk@bu.edu mskinner@bu.edu Hope to see you at a meeting soon. Website below has meeting schedule.
Muriel
Amyloidosis Support Groups Inc.
www.amyloidosissupport.com
Ken,
After my transplant, I no longer have any nerve pain. As far as muscle/nerve damage, some of the nerve damage is permanent. For example, I have some places on my ankles, feet and calves where I have no sensation to hot and cold. My muscles are weak in my lower limbs. To date, it has not progressed.
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