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Scotiaspirit

Distinguished member
Joined
Nov 21, 2015
Messages
209
Reason
PALS
Diagnosis
11/2015
Country
CA
State
Nova Scotia
City
Dartmouth
I have a frustrating problem as I was adopted at birth. I have found my birth mother's side of family; and as far as neurological conditions go, I have a half sister who has MS. However, when it comes to my birth father, our province (canadian law) is not allowed or permitted to give identifying information about birth mothers or birth fathers due to the law. Even when it comes to serious disease, the province will not unseal the identifying information. I do know that based on non identifying information, that I have one half brother and two half sisters on my birth father's side of family, but without knowing how or who to contact, it is virtually impossible. I registered a number of years ago on adoption registries to see if I could get any hits. I was able to find my birth mother as I had a last name to go by and it took four years to make contact back in the late 1980s. Despite having a name of my birth father, he apparently was raised by his grandmother and they have all since been deceased and all attempts to look for him have hit dead ends.
In trying to see if there is a family / genetic link as per my paternal side, will likely be impossible to get such information.

Telling kids.....about roughly a 5% chance of having the gene..... my son says he does not want to know and I can understand his reasoning. Like he says, "Dad, if I knew I had a gene where someday I could be dx with ALS, he would rather not know at this juncture in his life; as if he were to get any similar symptoms like cramping, muscle weakness, shortness of breath etc.... he says he would worry and worry and does not want to go there. I respect his decision. Has anyone else here had the adoption issue come up when trying to get family link information?
Any suggestions are welcome.
Scotiaspirit
 
You could ask to be tested for the known genetic defects? There are tests for about 60-75 percent of FALS causes. A negative test would not rule out FALS but would drop the odds further. The advantage to knowing a specific defect in the family for your son would be the strong possibility of there being targeted preventative treatments at some point in the future. IF you had an identified gene your son could choose to be tested if such a treatment emerged.
 
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My Chris was also adopted.

He also had found his birth mother, but her information on family has been less than helpful. One problem is that she is in her late 80's, and was an only child. She is strong as a horse but doesn't know a lot about health issues that may have been in the family.

He did meet his father, but he died after a stroke he had not long before Chris met him. His brother also died of a stroke and no other family was known to ask about history.

Chris's natural sister actually passed a few months before him from a totally unrelated illness, not neurological.

I think as Nikki suggests, if you suspect there is a familial link you could pay for the tests. Remember, that most cases of ALS are sporadic, and if your kids don't want to know it will be a decision to make on your heart, rather than it necessarily doing much to truly help. If it was FALS however, your son could always access that information at any future point as Nikki suggests and become involved in trials and research.

I wish there was an easy answer on this one.
 
I too have no family medical history. I found out my birth mother died a year ago. I had been told that my birth father is alive and has always wanted nothing to do with the situation/me. Ironically, he is from, and lives in, Nova Scotia.

Not having medical history has served me well. I never lived my life with fear of impending disease. I didn't worry that Relative X or Relative Y had this or that condition. It also forced my doctors to assume less and investigate more thoroughly.

In terms of the familial link, I think Nikki's advice is spot on.

Best wishes.
 
You could ask to be tested for the known genetic defects? There are tests for about 60-75 percent of FALS causes. A negative test would not rule out FALS but would drop the odds further. The advantage to knowing a specific defect in the family for your son would be the strong possibility of there being targeted preventative treatments at some point in the future. IF you had an identified gene your son could choose to be tested if such a treatment emerged.


I agree with what you are saying here and I will suggest to my doctor to proceed. I think it is very important to do so, as it could be key to him getting treatment someday should he develop or have a risk of developing the disease. Hopefully, a cure or manageable treatment will be found, we sure wish sooner rather than later.
 
My Chris was also adopted.

He also had found his birth mother, but her information on family has been less than helpful. One problem is that she is in her late 80's, and was an only child. She is strong as a horse but doesn't know a lot about health issues that may have been in the family.

He did meet his father, but he died after a stroke he had not long before Chris met him. His brother also died of a stroke and no other family was known to ask about history.

Chris's natural sister actually passed a few months before him from a totally unrelated illness, not neurological.

I think as Nikki suggests, if you suspect there is a familial link you could pay for the tests. Remember, that most cases of ALS are sporadic, and if your kids don't want to know it will be a decision to make on your heart, rather than it necessarily doing much to truly help. If it was FALS however, your son could always access that information at any future point as Nikki suggests and become involved in trials and research.

I wish there was an easy answer on this one.

I believe the laws are archaic here in Canada. In my opinion, I believe the laws for non disclosure had more to do with religious reasons than logical reasons. Today, there are programs like social assistance where teenage and single mothers can keep and raise their children, back in the late 1950s and early 1960's, young mothers were often ostracised and shamed for becoming pregnant, and often babies were adopted out to so called reasons such as, "protect the integrity and social status of a family". For example, my birth mother suffered a nervous breakdown for being forced to give me up a couple of years after my birth.

Apparently before being adopted to the family that loved and raised me, I was in a Salvation Army home for young kids up until about six months in age. I am sure I lost a lot of that important nurturing that should or could have taken place if my natural mother could have raised me.

The very first conversation that I had with my natural maternal grandparents, was that they asked me to forgive them for what they had done. (forcing my birth mother to give me up for adoption). They had no resources to help her raise me back at that time.

Because of diseases like ALS, I believe it is important that laws be amended that would give adoptees access to help find birth parents or siblings; or at least allow a third party to mediate between adoptees and birth parents to help get information about any possible genetic links to diseases. Back in the 1950s and 60s, there was very little if anything known about genetic links like there is today.
 
I too have no family medical history. I found out my birth mother died a year ago. I had been told that my birth father is alive and has always wanted nothing to do with the situation/me. Ironically, he is from, and lives in, Nova Scotia.

Not having medical history has served me well. I never lived my life with fear of impending disease. I didn't worry that Relative X or Relative Y had this or that condition. It also forced my doctors to assume less and investigate more thoroughly.

In terms of the familial link, I think Nikki's advice is spot on.

Best wishes.

I know for me, and speaking from my experience of meeting my birth mother; initially it did cause somewhat of a tension between my adoptive family, primarily my Mom and my birth mother's family, mainly from my adoptive mother who I called Mom, was fearful that I was going to not love her anymore, but Mom would have moved heaven and earth for me, so that was a fear she soon realized, it was just a fear. I feel certain that I had a much better situation as far as upbringing is concerned, by growing and being nurtured by my adoptive Mom. But after meeting my birth mother, she too paid a heavy price by being forced to give me up, where post partum depression led to a nervous breakdown as they called it years ago. As far as my birth father, I believe he took advantage of my birth mother being a teenager, and his behavior was certainly less than amicable, ,much closer to despicable, as he was a married man with several children.

I only know information that was shared to me by my birth mother about him, other than the non identifying information provided by the province. The last my birth mother knew, is that he likely moved to western Canada, she felt Alberta or B.C.

Back when I was 22, I had a life threatening medical problem, where the doctors at that time, called in my adoptive parents pleading with them to help me located my birth parents. For me, it took an additional four years to locate my birth mother, and for that condition, I was able to get information that helped me get better treatment for that condition which was something that was prevalent on the maternal side of the family.

Had it not been for that event, I probably would not have pursued looking for my birth parents, as I had no reason to want to at that juncture in my life.

In my opinion, when it comes to serious medical issues, I do believe the laws need to be amended, to at least allow a third party mediator be able to get information from surviving family members of both the maternal and paternal side, if they are still living.

My loyalty and heart remains with my adoptive family, they are my Mom and Dad. But I do also have a bond with my birth mother which had developed and nurtured over the years, especially after my birth parents passed away; and my maternal side siblings as well, but they all live half way across Canada, so my interaction is few and far in-between.
 
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