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Niece Diagnosed With Syncope


Ernie
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Hi everyone,

As you know, my family is being tested for a genetic study. Today 2 of my nieces were being tested for the study. One had symptoms since she was a child and the other never had symptoms. The one who had symptoms fainted in 55 minutes.

The asymptomatic one fainted in 18 minutes. I am so devasted because she came in as a healthy subject to help the research and we found out that she is sick. My sister has 4 children and they all have this disorder. My heart is torn as much as if they were my kids. It is so hard emotionally to find out that your loved ones have this **##(#**$ disorder (if you get my drift)!.

I just feel like crying and crying but it won't solve anything. I don't know how I can handle this research anymore. I am afraid to find out who else is sick.

Discouraged!!!

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I am so sorry Ernie! Just when you think it can't get worse...it does. It is so odd that the symptomatic one lasted longer than the non symptomatic one. Did they have an explanation for that? It's so hard to see your family suffer. Sometimes harder than yourself. Your family is in my thoughts and prayers...morgan

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Ernie, I can only imagine how hard it is to learn that your other family members have similar issues to you. I can't help but think, though, that in knowing that they have the potential to faint, they may be able to better take precautions--and the research your family is involved in may result in the ability to make a better, faster diagnosis, as well as the possibility of learning how to better treat them all, including you. That probably wont help you feel any better emotionally in *this* moment, but maybe in the future.

Hugs.

Nina

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I am sorry about your niece. Think of it this way...now she knows and before the testing, it was there but she was unaware. It's better to know than be in the dark. I applaud you and your family for doing this research. Hang in there and remember to take care of YOU! Hugs.

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Guest tearose

Ernie, I wanted to cry with you in the way one cries with relief as well. For all those times you just KNEW something was connected in your family, for all those times you were neglected and dismissed...I cry a sigh of saddness and relief. Now at loooong last you are taken seriously and the family testing will reveal many things you instinctively knew.

hang in there,

best regards,

tearose

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Ernie, I can only imagine how hard it is to learn that your other family members have similar issues to you. I can't help but think, though, that in knowing that they have the potential to faint, they may be able to better take precautions--and the research your family is involved in may result in the ability to make a better, faster diagnosis, as well as the possibility of learning how to better treat them all, including you. That probably wont help you feel any better emotionally in *this* moment, but maybe in the future.

Hugs.

Nina

Nina, you have found the best words for Ernie.

I am sorry, too about the findings, but feel that it is better to know than not having the information. They might have been clueless in the future not knowing what was going wrong... Thanks to you, they know beforehand and can take the measures to avoid feeling worse...And time to investigate the cause...

Love,

Tessa

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My dear friends,

Thank you for your kind words. It made me feel better to read your messages as I received them as gifts. I am slowly accepting my niece's diagnosis.

All day I felt I was going to jump out of my skin because I am having some administrative problems with the researchers. I called the nurse and the problem might be solved next week.

Morgan, the doctor did not say anything about the reason why my asymptomatic niece fainted. He never answered any of my questions.

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It must be very difficult to know that they are sick. In Arabic, we say: Al-Khalatu k-al-Umm; which means, "The maternal aunt is most like the mother." Because sisters are so close, they are also very close to each others' children. It is better to know, however. She can plan her life better that way. It must be shocking news to all your family, however. I hope that this research helps all of you. It's courageous of you to keep pushing ahead. It might help if you detach a bit, just enough to cope emotionally. You are not responsable for the illness, just because through your efforts it was detected. You know that.

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Ernie,

Sorry to hear this. I am not good with words, but I think many of the others summed up my thoughts and feelings well. I think it is amazing what all you are doing for your family, and hopefully it will be very beneficial to them all in the long run. You didn't make any of them symptomatic, but you are doing all you can to help them treat and decrease any symptoms in the future. You are doing all you can to help the future of your family. Hopefully catching the symptoms early for your asymptomatic niece will be beneficial, due to it gives an opportunity to be proactive, and avoid issues down the road.

I hope that your trial will continue and lead to help for your entire family!

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You are so very strong and courageous, Ernie. With what you endure each day, I don't know how you do it, but your family must be so thankful for you. I'm sure that as your niece and other family members begin to understand the condition and get treatment, they'll provide more strength for you to carry on. They won't have the struggles of unbelieving doctors when they have you as mentor, guide and knowledgeable support.

All the best to all your family as testing proceeds. You are all in my thoughts and prayers.

Mary P

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Hi,

You are all so sweet and reliable. Masumeh. You are right. My sister's children are like my children.

I feel better now about my niece's diagnosis. I think I have come to terms with it to a certain degree.

Today I went to see the Research Investigator and we discussed some of the technical problems we had during the 4 postural catecholamine tests with 4 of my relatives. He will solved the problems. He was very nice with me. He told me that he really wants to find the genetic mutation and help my family find the proper treatment. I felt that he was sincere. That made me feel much better. He even told me that he bought a new piece of equipment of 70,000$ for a new test for us. He also will buy an intra cranial droppler for the TTT. So he is getting more and more involved in the research. So far there are 6 of us diagnosed in his research protocol. He wants at least 5 sick and 5 normal. But he would enjoy 25 sick and 25 healthy. The difficult part is finding healthy people in my family!!!

Thanks girls for your continuous support.

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Ernie,

I am glad it still seems to be going well and that he was able to work things out with the research. (Of course I wish the research wasn't needed for you and your family, but I think it is good that it will hopefully lead to some help for all of you. :P )

It is amazing that they put that much money etc. into this! They sound like great drs. that care about the patient and helping to find out what is behind all of your family's symptoms/conditions.

I hope it continues to go well! Keep us updated!!! :)

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Hi,

I don't know how the researcher gets the funding but my guess is that he gets its either from the government or from other sources. It costs 1,000$ to analyse the DNA of each patient.

I have my relatives stay over my place for 2-3 days when they have tests and I accompany them at all their doctors appointments and testing.

Part of what I do is so thrilling. It's like living science fiction. Other times it is so stressful I would just want to drop out of it.

I am glad that the doctor understands my mood swings and does not take it personally. He especially knows that if I am talking standing I will get agressive within a couple of minutes because of the adrenaline rushes so her prefers that I talk sitting. Also it avoid my fainting while talking to him!

He wants another patient who is willing to faint while on the TTT connected to the new guysmo that costs 70,000$. I did not volunteer!

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