Opening a can o' worms

Tammy15 · Sep 26, 2011

for those here diagnosed late in life had any other family member recentky diagnosed so that made you more aware of what your issues could be.or basically was it more that you finally stumbled upon a doctor who pieced it all together. I guess I kind of wonder. My son who will be 30 this year was diagnosed at 4 days old mecomium issue and I rememebr being told at 3 in the am what this possibly could mean. I had never heard of CF no one in recent family ever had it, in fact I thought it was a type of cerebal palsey. My son was born 1981 and we had a few great aunts and grandparents alive on both sides. The only thing my aunt remembered was when she was growing up the sick babies were put kind of behind stove to keep warm and everyone said consumption. Of course our next two children born were tested right away. My middle daughter and 2 grandchildren negative. My youngest daughter who passed positive and weird thing with her she was a hard birth and there was this like burnt smell in delivery room and I looked at my mom and said she has it. I told the doctor she would throw up her feedings at first they thought I was crazy. Now her son was tested and he is also negative.
 
I guess I consider myself lucky in away it sounds like quite a few struggled along until finally a dotor really looked. I am thinking without my son needing surgery at 4 days old he could have gone years with us not knowing.
 
Tammy

Tammy15 · Sep 26, 2011

for those here diagnosed late in life had any other family member recentky diagnosed so that made you more aware of what your issues could be.or basically was it more that you finally stumbled upon a doctor who pieced it all together. I guess I kind of wonder. My son who will be 30 this year was diagnosed at 4 days old mecomium issue and I rememebr being told at 3 in the am what this possibly could mean. I had never heard of CF no one in recent family ever had it, in fact I thought it was a type of cerebal palsey. My son was born 1981 and we had a few great aunts and grandparents alive on both sides. The only thing my aunt remembered was when she was growing up the sick babies were put kind of behind stove to keep warm and everyone said consumption. Of course our next two children born were tested right away. My middle daughter and 2 grandchildren negative. My youngest daughter who passed positive and weird thing with her she was a hard birth and there was this like burnt smell in delivery room and I looked at my mom and said she has it. I told the doctor she would throw up her feedings at first they thought I was crazy. Now her son was tested and he is also negative.

I guess I consider myself lucky in away it sounds like quite a few struggled along until finally a dotor really looked. I am thinking without my son needing surgery at 4 days old he could have gone years with us not knowing.

Tammy

Tammy15 · Sep 26, 2011

for those here diagnosed late in life had any other family member recentky diagnosed so that made you more aware of what your issues could be.or basically was it more that you finally stumbled upon a doctor who pieced it all together. I guess I kind of wonder. My son who will be 30 this year was diagnosed at 4 days old mecomium issue and I rememebr being told at 3 in the am what this possibly could mean. I had never heard of CF no one in recent family ever had it, in fact I thought it was a type of cerebal palsey. My son was born 1981 and we had a few great aunts and grandparents alive on both sides. The only thing my aunt remembered was when she was growing up the sick babies were put kind of behind stove to keep warm and everyone said consumption. Of course our next two children born were tested right away. My middle daughter and 2 grandchildren negative. My youngest daughter who passed positive and weird thing with her she was a hard birth and there was this like burnt smell in delivery room and I looked at my mom and said she has it. I told the doctor she would throw up her feedings at first they thought I was crazy. Now her son was tested and he is also negative.

I guess I consider myself lucky in away it sounds like quite a few struggled along until finally a dotor really looked. I am thinking without my son needing surgery at 4 days old he could have gone years with us not knowing.

Tammy

hmw · Sep 26, 2011

Bill, I am going to try to articulate what I feel but I am having a hard time because I feel a bit under attack here and I am not sure why. I did not post on the other thread (actually, did not even read it.) And to everyone here~ I don't want division. I simply am looking ahead to the future within the view of this disease and how it's presented (esp to us parents by the CFF, etc) and trying to understand, trying to balance hope & optimism with reality. I feel like I can get that from real people better than faceless statistics telling me what to expect in the future. And my big question within that being- how accurate are those expectations in the first place when your kid is sick and progressing from so young? THAT is why I want to know about those who faced a more difficult time from the beginning, not to insult anyone else, not to minimize anyone else's pain.

<div class="FTQUOTE"><begin quote>Be thankful that you live in a world where infants are tested within hours of birth and there is early treatment. Also be thankful that some interested people raised the money and funded the research that you benefit from now.</end quote></div>
Bill~ my state was the 48th or 49th to implement newborn screening, and it didn't happen until Emily was 8yrs old. It was an absolute WILD GOOSE CHASE YEARS IN THE MAKING to finally get my daughter diagnosed when she was 7.5yrs old and she only weighed 2 pounds more at that time than she did at age 3 after nonstop frantic effort and specialist after specialist and nothing I did helped her and all I could do was watch her get sicker (by then respiratory symptoms had set in too) and more frail. And YES I will never stop being grateful for the CFF and all they have done, and will appreciate never being doubted on that count again.

hmw · Sep 26, 2011

Bill, I am going to try to articulate what I feel but I am having a hard time because I feel a bit under attack here and I am not sure why. I did not post on the other thread (actually, did not even read it.) And to everyone here~ I don't want division. I simply am looking ahead to the future within the view of this disease and how it's presented (esp to us parents by the CFF, etc) and trying to understand, trying to balance hope & optimism with reality. I feel like I can get that from real people better than faceless statistics telling me what to expect in the future. And my big question within that being- how accurate are those expectations in the first place when your kid is sick and progressing from so young? THAT is why I want to know about those who faced a more difficult time from the beginning, not to insult anyone else, not to minimize anyone else's pain.

<div class="FTQUOTE"><begin quote>Be thankful that you live in a world where infants are tested within hours of birth and there is early treatment. Also be thankful that some interested people raised the money and funded the research that you benefit from now.</end quote>
Bill~ my state was the 48th or 49th to implement newborn screening, and it didn't happen until Emily was 8yrs old. It was an absolute WILD GOOSE CHASE YEARS IN THE MAKING to finally get my daughter diagnosed when she was 7.5yrs old and she only weighed 2 pounds more at that time than she did at age 3 after nonstop frantic effort and specialist after specialist and nothing I did helped her and all I could do was watch her get sicker (by then respiratory symptoms had set in too) and more frail. And YES I will never stop being grateful for the CFF and all they have done, and will appreciate never being doubted on that count again.

hmw · Sep 26, 2011

Bill, I am going to try to articulate what I feel but I am having a hard time because I feel a bit under attack here and I am not sure why. I did not post on the other thread (actually, did not even read it.) And to everyone here~ I don't want division. I simply am looking ahead to the future within the view of this disease and how it's presented (esp to us parents by the CFF, etc) and trying to understand, trying to balance hope & optimism with reality. I feel like I can get that from real people better than faceless statistics telling me what to expect in the future. And my big question within that being- how accurate are those expectations in the first place when your kid is sick and progressing from so young? THAT is why I want to know about those who faced a more difficult time from the beginning, not to insult anyone else, not to minimize anyone else's pain.
 
 
 <div class="FTQUOTE"><begin quote>Be thankful that you live in a world where infants are tested within hours of birth and there is early treatment. Also be thankful that some interested people raised the money and funded the research that you benefit from now.</end quote>
 Bill~ my state was the 48th or 49th to implement newborn screening, and it didn't happen until Emily was 8yrs old. It was an absolute WILD GOOSE CHASE YEARS IN THE MAKING to finally get my daughter diagnosed when she was 7.5yrs old and she only weighed 2 pounds more at that time than she did at age 3 after nonstop frantic effort and specialist after specialist and nothing I did helped her and all I could do was watch her get sicker (by then respiratory symptoms had set in too) and more frail. And YES I will never stop being grateful for the CFF and all they have done, and will appreciate never being doubted on that count again.

just1more · Sep 26, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Shelbyville

Hello:<div>
</div><div>Is this the ADULT section of the forum? I have seen so many helpful posts in the brief four yeas of finding out how "I caught CF" and what it means to me. I now see posts of those w/o CF judging the users of the ADULTS section with the intent to find a place to stick the LUCKY over 40 CFers. We need help also but are soooo lucky to be alive and will never lead a normal life like someone w/o out CF unless they are a care giver and my heart goes out to the care givers! IMHO this is no place for division among the truly helpful support group. No need to dig in dirt for worms we'll only get dirty. </div></end quote></div> Shelbyville, first of all yes this is the adult forum. However, that does not mean it is exclusively for any segment of the population including adults. Note: we have a large contingent of adults w/CF in various progressions as well as the parents of CFrs on this site and 99% of the time everyone gets along. That said, I don't recall anyone saying you (or anyone else with CF) was lucky. Nobody with CF is lucky, this disease sucks. However, to expose a little bit more than I normally would try and help you understand where the poster is coming from: My son was dx'd at birth, and would have died within days without surgery. He has had multiple bowel resections, all which would have killed him; and at the ripe old age of 9.5 he realistically is rapidly approaching the phase known as end-stage liver failure and watching it is killing my whole family. Regardless of age at dx: Is the final outcome the same--yes. Do we benefit from talking to each other and sharing ideas--yes. Can we share a forum and the label CF--yes. Can you tell me to my face that someone diagnosed at 40 is facing the same disease as my son--this is where the question is raised. Unfortunately there is no easy answer, so for now we learn to live and deal together.

just1more · Sep 26, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Shelbyville

Hello:
Is this the ADULT section of the forum? I have seen so many helpful posts in the brief four yeas of finding out how "I caught CF" and what it means to me. I now see posts of those w/o CF judging the users of the ADULTS section with the intent to find a place to stick the LUCKY over 40 CFers. We need help also but are soooo lucky to be alive and will never lead a normal life like someone w/o out CF unless they are a care giver and my heart goes out to the care givers! IMHO this is no place for division among the truly helpful support group. No need to dig in dirt for worms we'll only get dirty.</end quote> Shelbyville, first of all yes this is the adult forum. However, that does not mean it is exclusively for any segment of the population including adults. Note: we have a large contingent of adults w/CF in various progressions as well as the parents of CFrs on this site and 99% of the time everyone gets along. That said, I don't recall anyone saying you (or anyone else with CF) was lucky. Nobody with CF is lucky, this disease sucks. However, to expose a little bit more than I normally would try and help you understand where the poster is coming from: My son was dx'd at birth, and would have died within days without surgery. He has had multiple bowel resections, all which would have killed him; and at the ripe old age of 9.5 he realistically is rapidly approaching the phase known as end-stage liver failure and watching it is killing my whole family. Regardless of age at dx: Is the final outcome the same--yes. Do we benefit from talking to each other and sharing ideas--yes. Can we share a forum and the label CF--yes. Can you tell me to my face that someone diagnosed at 40 is facing the same disease as my son--this is where the question is raised. Unfortunately there is no easy answer, so for now we learn to live and deal together.

just1more · Sep 26, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Shelbyville

Hello:
Is this the ADULT section of the forum? I have seen so many helpful posts in the brief four yeas of finding out how "I caught CF" and what it means to me. I now see posts of those w/o CF judging the users of the ADULTS section with the intent to find a place to stick the LUCKY over 40 CFers. We need help also but are soooo lucky to be alive and will never lead a normal life like someone w/o out CF unless they are a care giver and my heart goes out to the care givers! IMHO this is no place for division among the truly helpful support group. No need to dig in dirt for worms we'll only get dirty.</end quote> Shelbyville, first of all yes this is the adult forum. However, that does not mean it is exclusively for any segment of the population including adults. Note: we have a large contingent of adults w/CF in various progressions as well as the parents of CFrs on this site and 99% of the time everyone gets along. That said, I don't recall anyone saying you (or anyone else with CF) was lucky. Nobody with CF is lucky, this disease sucks. However, to expose a little bit more than I normally would try and help you understand where the poster is coming from: My son was dx'd at birth, and would have died within days without surgery. He has had multiple bowel resections, all which would have killed him; and at the ripe old age of 9.5 he realistically is rapidly approaching the phase known as end-stage liver failure and watching it is killing my whole family. Regardless of age at dx: Is the final outcome the same--yes. Do we benefit from talking to each other and sharing ideas--yes. Can we share a forum and the label CF--yes. Can you tell me to my face that someone diagnosed at 40 is facing the same disease as my son--this is where the question is raised. Unfortunately there is no easy answer, so for now we learn to live and deal together.

Jennyvb17 · Sep 26, 2011

I think the problem is that you are never going to know how your childs life will turn out. I imagine it is as hard for a parent to let go of.

Regarding those diagnosed later in life.... there was no genetic testing... I was negative for my sweat test! They already knew I had CF because of miconium illius.

I thought they give kids born today a higher expectancy than us born in the 80's and earlier.
Parents need to realize that in the early 80's I was given expectancy of 18, now its twice that.
You can't judge a child by what is expected.

Jennyvb17 · Sep 26, 2011

I think the problem is that you are never going to know how your childs life will turn out. I imagine it is as hard for a parent to let go of.

Regarding those diagnosed later in life.... there was no genetic testing... I was negative for my sweat test! They already knew I had CF because of miconium illius.

I thought they give kids born today a higher expectancy than us born in the 80's and earlier.
Parents need to realize that in the early 80's I was given expectancy of 18, now its twice that.
You can't judge a child by what is expected.

Jennyvb17 · Sep 26, 2011

I think the problem is that you are never going to know how your childs life will turn out. I imagine it is as hard for a parent to let go of.
 
 Regarding those diagnosed later in life.... there was no genetic testing... I was negative for my sweat test! They already knew I had CF because of miconium illius.
 
 I thought they give kids born today a higher expectancy than us born in the 80's and earlier.
 Parents need to realize that in the early 80's I was given expectancy of 18, now its twice that.
 You can't judge a child by what is expected.

albino15 · Sep 27, 2011

I think there must be something (probably genetic) that somehow controls the severity and onset of CF and its symptoms. I was diagnosed around 2 months old because of digestive problems, no lung involvement. I am 20 years old now and have never had a "Tune up" I'd never even heard of a "Tune up" until I found this site when I was 15, and ever since diagnosis My weight has always been fine. My problems have mainly been my sinuses. I've had around four nasal polyp surgeries.

I'm sure there are probably other people here who are healthier than me and I know there are plenty who are worse off. What I'm confused about and maybe there are others out there wondering about this too is: are people like me (who have had few problems so far) abnormally healthy or are a lot of the young people on this site just abnormally sick? What is the majority?

As far as dividing people up, it might happen anyway, if they figure out how to predict the course a particular persons CF will take. Right now It might be better just to separate people based on who experienced a sudden decline when they were really young and who experienced a decline when they were older. I just don't think it's very fair to parents with super sick babies and children to include me in THEIR life expectancy.

Bare in mind, I reserve my right to be completely wrong. LOL

albino15 · Sep 27, 2011

I think there must be something (probably genetic) that somehow controls the severity and onset of CF and its symptoms. I was diagnosed around 2 months old because of digestive problems, no lung involvement. I am 20 years old now and have never had a "Tune up" I'd never even heard of a "Tune up" until I found this site when I was 15, and ever since diagnosis My weight has always been fine. My problems have mainly been my sinuses. I've had around four nasal polyp surgeries.

I'm sure there are probably other people here who are healthier than me and I know there are plenty who are worse off. What I'm confused about and maybe there are others out there wondering about this too is: are people like me (who have had few problems so far) abnormally healthy or are a lot of the young people on this site just abnormally sick? What is the majority?

As far as dividing people up, it might happen anyway, if they figure out how to predict the course a particular persons CF will take. Right now It might be better just to separate people based on who experienced a sudden decline when they were really young and who experienced a decline when they were older. I just don't think it's very fair to parents with super sick babies and children to include me in THEIR life expectancy.

Bare in mind, I reserve my right to be completely wrong. LOL

albino15 · Sep 27, 2011

I think there must be something (probably genetic) that somehow controls the severity and onset of CF and its symptoms. I was diagnosed around 2 months old because of digestive problems, no lung involvement. I am 20 years old now and have never had a "Tune up" I'd never even heard of a "Tune up" until I found this site when I was 15, and ever since diagnosis My weight has always been fine. My problems have mainly been my sinuses. I've had around four nasal polyp surgeries.
 
 I'm sure there are probably other people here who are healthier than me and I know there are plenty who are worse off. What I'm confused about and maybe there are others out there wondering about this too is: are people like me (who have had few problems so far) abnormally healthy or are a lot of the young people on this site just abnormally sick? What is the majority?
 
 As far as dividing people up, it might happen anyway, if they figure out how to predict the course a particular persons CF will take. Right now It might be better just to separate people based on who experienced a sudden decline when they were really young and who experienced a decline when they were older. I just don't think it's very fair to parents with super sick babies and children to include me in THEIR life expectancy.
 
 Bare in mind, I reserve my right to be completely wrong. LOL

hmw · Sep 27, 2011

I try very hard not to judge my child by any set of expectations or assume anything- except to assume expectations will continue to rise. And yes- they absolutely give children today a higher expectancy than what adults of generations past were given.

THAT precisely is what makes the whole prognosis so confusing: today's sicker children are faring worse than those doing the best born 30, 40, sometimes even more years ago when their prognosis was half of what our kids are given and treatments were so much more limited during their childhoods. *That*, to put it concisely, is what makes it all so difficult when it comes to this disease.

I think it's human nature to want to understand... I do 'get' that on some levels it may be impossible. In some ways I want to understand so I can figure out how to get my daughter into a better place, how to get her to a place where SHE can be one of the healthier ones in decades to come. And in other ways, I want the ones researching this disease to be able to use the info about all the individuals to have this disease to better structure the registry and statistics to more realistically portray prognosis... because honestly, sometimes it feels like us parents newer to things are being fed something completely unrealistic and better understanding (at least on my part) comes from those living the disease.

hmw · Sep 27, 2011

I try very hard not to judge my child by any set of expectations or assume anything- except to assume expectations will continue to rise. And yes- they absolutely give children today a higher expectancy than what adults of generations past were given.

THAT precisely is what makes the whole prognosis so confusing: today's sicker children are faring worse than those doing the best born 30, 40, sometimes even more years ago when their prognosis was half of what our kids are given and treatments were so much more limited during their childhoods. *That*, to put it concisely, is what makes it all so difficult when it comes to this disease.

I think it's human nature to want to understand... I do 'get' that on some levels it may be impossible. In some ways I want to understand so I can figure out how to get my daughter into a better place, how to get her to a place where SHE can be one of the healthier ones in decades to come. And in other ways, I want the ones researching this disease to be able to use the info about all the individuals to have this disease to better structure the registry and statistics to more realistically portray prognosis... because honestly, sometimes it feels like us parents newer to things are being fed something completely unrealistic and better understanding (at least on my part) comes from those living the disease.

hmw · Sep 27, 2011

I try very hard not to judge my child by any set of expectations or assume anything- except to assume expectations will continue to rise. And yes- they absolutely give children today a higher expectancy than what adults of generations past were given.
 
 THAT precisely is what makes the whole prognosis so confusing: today's sicker children are faring worse than those doing the best born 30, 40, sometimes even more years ago when their prognosis was half of what our kids are given and treatments were so much more limited during their childhoods. *That*, to put it concisely, is what makes it all so difficult when it comes to this disease.
 
 I think it's human nature to want to understand... I do 'get' that on some levels it may be impossible. In some ways I want to understand so I can figure out how to get my daughter into a better place, how to get her to a place where SHE can be one of the healthier ones in decades to come. And in other ways, I want the ones researching this disease to be able to use the info about all the individuals to have this disease to better structure the registry and statistics to more realistically portray prognosis... because honestly, sometimes it feels like us parents newer to things are being fed something completely unrealistic and better understanding (at least on my part) comes from those living the disease.

Shelbyville · Sep 27, 2011

WOW:<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com<img src="i/expressions/face-icon-small-blush.gif" border="0">ffice<img src="i/expressions/face-icon-small-blush.gif" border="0">ffice" /><o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
We take another scoop looking for worms and end up with a dirty division that would have had MEL (I miss you dearly, breath easy) finding common ground for all. We have lost sooo much on this forum over the past year and one half. The principal purpose of 99% of the posts are to help all involved however was not posted in the proper location or worded in a way that stirs controversy. Some posts are taken or worded in an adversarial context but I believe we are all here to help. There is no place for any other agenda. Maybe some brain storming will help.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
The old guard have tons of history and may know a few tricks for a longer life supporting what the sterile clinics have suggested. We all come from the clinic and say "yea like that will help". Someone here has traveled down your road let them help guide you along so that the turns are easier to navigate.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
Maybe Enneo could suggest how the topic should be placed or titled so that the post is not adversarial. How about creating a "care takers" ADULT section. That would keep the focus in the direction of the most benefit.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
I guarantee that not one of us LUCKY and I mean LUCKY (don't read any more into it than that) to be here will go to the end of time to help. I have seen so many organize and coordinate functions for the good of all. I know one in my clinic who lost two young sons and is the most caring individual on the planet.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
This disease really does suck let's not give it the opportunity to divide the truly caring people who visit and contribute to the forum. CF wins tooo many battles do not let it win the war.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
No military background here. <o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>

Shelbyville · Sep 27, 2011

WOW:<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com<img src="i/expressions/face-icon-small-blush.gif" border="0">ffice<img src="i/expressions/face-icon-small-blush.gif" border="0">ffice" /><o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
We take another scoop looking for worms and end up with a dirty division that would have had MEL (I miss you dearly, breath easy) finding common ground for all. We have lost sooo much on this forum over the past year and one half. The principal purpose of 99% of the posts are to help all involved however was not posted in the proper location or worded in a way that stirs controversy. Some posts are taken or worded in an adversarial context but I believe we are all here to help. There is no place for any other agenda. Maybe some brain storming will help.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
The old guard have tons of history and may know a few tricks for a longer life supporting what the sterile clinics have suggested. We all come from the clinic and say "yea like that will help". Someone here has traveled down your road let them help guide you along so that the turns are easier to navigate.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
Maybe Enneo could suggest how the topic should be placed or titled so that the post is not adversarial. How about creating a "care takers" ADULT section. That would keep the focus in the direction of the most benefit.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
I guarantee that not one of us LUCKY and I mean LUCKY (don't read any more into it than that) to be here will go to the end of time to help. I have seen so many organize and coordinate functions for the good of all. I know one in my clinic who lost two young sons and is the most caring individual on the planet.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
This disease really does suck let's not give it the opportunity to divide the truly caring people who visit and contribute to the forum. CF wins tooo many battles do not let it win the war.<o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>
No military background here. <o<img src="i/expressions/face-icon-small-tongue.gif" border="0">></o<img src="i/expressions/face-icon-small-tongue.gif" border="0">>

Opening a can o' worms

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