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Messages - hemphiliamom

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Tsarevich Alexei Nicholaievich / Re: Alexei and Hemophilia
« on: July 18, 2004, 11:09:22 PM »
I have just finished reading the book and If someone can point out to me WHERE in the book it says ANYTHING about recessive genes causing his hemophilia I would appreciate it...yes I know it has to be an X sex link recessive gene...but where does it say anywhere in there that BOTH parents had recessive genes? This is what my grandmother told me. This is why I spent 20 bucks and read a 600 page book...Yes I am a reader and I love to do it so it was not a big deal, the big thing is I didn't get out of it what she was saying...SO I am hoping that if anyone has any info they might be able to pass it along! Thanks, Shan!

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Tsarevich Alexei Nicholaievich / Re: Alexei and Hemophilia
« on: July 01, 2004, 12:16:36 PM »
Adele you are very welcome...and if you ever have any questions please do not be afraid to ask...I will do my best to answer them as best I can with the most accurate information I can.


As for the ety...of the word....think about the meaning of affinity......think about it! Still a strange thing to name it any way you look at it!

Shan

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Tsarevich Alexei Nicholaievich / Re: Alexei and Hemophilia
« on: July 01, 2004, 11:25:55 AM »
Thanks!

I too would like to know what web page you got that from because I could not find anything like that!

Thanks, Shan

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Tsarevich Alexei Nicholaievich / Re: Alexei and Hemophilia
« on: July 01, 2004, 08:10:19 AM »
 ;)

  I am not sure if imbreading "started" the gene...but if that is not it where did it come from? I did not mean to imply that Alexandra married a cousin or anyone in her family did and that is what caused her son to have it. Sorry should have been more clear!

   I belive the doctor that told my Grandparents this was totally full of it and just didn't know how to explain it. There is genetic mutation...and that could have been it...but back in the late 50's I am not sure, but I don't think they knew much about genetics!

  As far as the info I have been give...if my sons have daughters there is a 50/50 chance that they will be carries, just as there is with my daughter...now I may have been told wrong...You hear some much about it and have to sift through it and see what the deal really is. I pray my sons have sons and my daughter is not a carrier so that this will leave our family forever...but you look at the odds and I have about half a chance of that happening.

  As for my Grandmother telling me to read the book...I have read NOTHING in there that states anything about recessive genes....I however had not gotten though the book...so if anyone that has read it can tell me it is there so I can look it up I would appreciate it.

Thanks, Shan

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Tsarevich Alexei Nicholaievich / Re: Alexei and Hemophilia
« on: June 29, 2004, 06:23:10 AM »
[quote author=Janet_W.
\ I hope I treat folks with hemophilia the same way I treat folks with any other type of condition, be it cancer, Alzheimer's disease, AIDS, diabetes, Downs Syndrome, loss of sight or hearing, or whatever--with consideration (as I would treat anyone) and the knowledge that is just one aspect of that person's life, and it doesn't mean the rest of us are licensed to be judgmental or patronizing, or that we need to run screaming in the other direction.     :)

[/quote]

;D
I would not think that most people would treat anyone with hemophilia any differently than any one else. Fact of the matter is, unless you know that someone has it, you could not pick them out of the crowd.

I was looking though the photos in the Nicholas and Alexandra book and notice a picture of little Alexi in metal braces to "help" a bleed he had. Oh My, that would have made it so much worse. Just makes me heart go out to them for NOT having the advances like we have today..even like we had 20 years ago to know that metal braces would have caused much much more pain and prolonged a bleeding episode, or even made more begin. I do feel for them in that aspect.

As for the imbreading...I am pretty sure that is where it came from....then again...some people have said it is cause when both parents put off a recessive chromoson...yet I cannot find anywhere where that has been the case. I know when my father was born with hemophilia that is what they told my grandparents and they have lived with guilt, that I do not believe they should have had to live with. This is my quest...to prove or disprove what they were told so many years ago! If there is anyone out there that has any information on this I would appreciate it.

As for the meaning of the words....Me and a friend of mine have been doing some research for a few months now on why it was names hemo (blood) philia (love/lover) and we have not found anything. Again if anyone has information I would appreciate it.

I know I came onto the board somewhat strong...I do get pretty passionate when it comes to hemophilia, and it is due to the fact that 80% of people I come across know nothing of it but think they know everything about it. Sorry if I came off as rude!

Thanks Everyone, Shan

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Tsarevich Alexei Nicholaievich / Re: Alexei and Hemophilia
« on: June 27, 2004, 09:03:15 AM »


Thank you for the kind words! As for a link between Royal imbreading...one would have to wonder! I know I have thought that many times....because they were all related in some sort of way. I am unsure of the facts on this paticular subject, and it is time consuming to sift though all the documentation to find the facts!

I have often wondered also why they named the disease what they did...look up the meaning of the two words that go into making the word....

Hemo=blood   Philia=love or lover

Isn't that a strange thing? I mean you can look at it in a lot of different ways but when it comes back to it that is just a strange word for this disease.

Anyway, I bought Nicholas and Alexandra last night and I intend on getting it read as soon as I can...I am sure there will be a lot more to say.

Thank you, Shan

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Tsarevich Alexei Nicholaievich / Re: Alexei and Hemophilia
« on: June 26, 2004, 10:03:39 AM »
 :)     Hello All, I am new to this but have been dealing with this "awful disease" as someone put it my entire life almost 28 years now. And it is not as awful now as it once was. I can only imagine how it was for them back then, but I wanted to say that PLEASE do not look at it as awful, because it is no longer that way.
Granted I think it is the worst thing to ever hit our family...I lost my father because of it and many many others have lost from it as well. BUT I do have two sons that do have it and they are no different than anyone else! You cannot look at them and tell.

I am sorry if I sound a little rude about it...I do not mean to come off as that way. I tend to be defensive though and if anyone out there has this touching their lives I would hope you know what I am talking about.

  Now that that is out of my system...I am just learning about the Russian Royals....it was told to my Grandmother when my father was born that she and my Grandfather BOTH had recessive genes and that is where it came from. NOW in all my research that I have done, and I have done a lot, I have never come across this explanation for it. I have heard of genetic mutation, and it just being in the chromosones that the good Lord gave you, but never this.

  IF there is anyone out there that can explain this paticular explanation to me I would be forever greatful.

  Thank You and I look forward to reading more about this family.
                                               Shan

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