Guest guest Posted December 2, 2001 Report Share Posted December 2, 2001 WOW, Hello Clive... nice to meet you! If you don't mind me saying I think you are the oldest person I have heard of with CHARGE! You are inspiring! Thanks! Hugs Kris - Mommy to - (Austin - Aug 23, 1999 - Sept 22, 1999 CHARGE) - 16, ie - 14, - 13, new baby due in July Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2001 Report Share Posted December 2, 2001 Hi My name is Clive, 48 years old and suffer from CHARGE. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2001 Report Share Posted December 2, 2001 Clive, How great to meet you! A lot of us parents of younger people with CHARGE wonder about life expectancy of people with CHARGE, how they've made out in life, how they're doing. It's great to hear from some people who are older who have CHARGE. I'd love to hear more about your life if you have time, when you were diagnosed, etc... Take Care! Weir Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " When the tide of life turns against you and the current upsets your boat, don't waste your tears on what might have been, just turn on your back and float. " -Anonymous Hi Hi My name is Clive, 48 years old and suffer from CHARGE. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 > Hi > > My name is Clive, 48 years old and suffer from CHARGE. The youngest of 3 children, I live in Farnborough, Hampshire, England. I was diagnosed as having a relatively mild form of CHARGE in 1994. I suffer from the following - Blockage of the passages at the back of the nose - blockage on one side Breathing problems - trouble swallowing Incomplete development of the external genitals, - hormonal problems. Conductive loss in the middle ear - partially deaf. Cleft palate Minor abnormal dental development Absent semi-circular canals (in the inner ear) this means that the balance sense is affected. Sleep Apnoea. My eyes are reasonably OK but I need glasses for distance and they are sensitive to bright lights. I have worked for the same local company for 26 years in a variety of roles and I hold qualifications to BTEC NC Standard (College Level). During my career I have held a wide variety of positions from industrial, through scientific to administrative grades. For the past two years, I have been working in human resources, as a Training Administrator, where I am responsible for the training records of 3,000 people. I am computer literate and have had experience of MS Office, the Internet and web page design. I am a volunteer with a national charity for the deaf called Breakthrough Deaf Hearing Integration (Southern Counties) and a member of another charity called Hearing Concern. I am also a member of a deaf church and a hard of hearing social group attached to Breakthrough. Although I have a limited knowledge of BSL (British Sign Language), I am keen to improve my skills in this area. I have recently become a co-opted school governor at a local junior school (7 to 11 years old) which has a partially hearing unit attached to it, and I am also a member of the Scouts Association with 20 years experience. Another major interest is that I am an amateur genealogist, where I am a founder UK member of an international one-name family history association. Check out my website www.cgmolyneux.net. My other interests include: Science Fiction, Astronomy, Camping, Walking, Music, Reading, Archery, Green Bowls, 10 pin Bowling, and Model Making Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Hi :-D The youngest of 3 children, I live in Farnborough, Hampshire, England. I was diagnosed as having a relatively mild form of CHARGE in 1994. I suffer from the following - Blockage of the passages at the back of the nose - blockage on one side Breathing problems - trouble swallowing Incomplete development of the external genitals, - hormonal problems. Conductive loss in the middle ear - partially deaf. Cleft palate Minor abnormal dental development Absent semi-circular canals (in the inner ear) this means that the balance sense is affected. Sleep Apnoea. My eyes are reasonably OK but I need glasses for distance and they are sensitive to bright lights. I have worked for the same local company for 26 years in a variety of roles and I hold qualifications to BTEC NC Standard (College Level). During my career I have held a wide variety of positions from industrial, through scientific to administrative grades. For the past two years, I have been working in human resources, as a Training Administrator, where I am responsible for the training records of 3,000 people. I am computer literate and have had experience of MS Office, the Internet and web page design. I am a volunteer with a national charity for the deaf called Breakthrough Deaf Hearing Integration (Southern Counties) and a member of another charity called Hearing Concern. I am also a member of a deaf church and a hard of hearing social group attached to Breakthrough. Although I have a limited knowledge of BSL (British Sign Language), I am keen to improve my skills in this area. I have recently become a co-opted school governor at a local junior school (7 to 11 years old) which has a partially hearing unit attached to it, and I am also a member of the Scouts Association with 20 years experience. Another major interest is that I am an amateur genealogist, where I am a founder UK member of an international one-name family history association. Check out my website www.cgmolyneux.net. My other interests include: Science Fiction, Astronomy, Camping, Walking, Music, Reading, Archery, Green Bowls, 10 pin Bowling, and Model Making > Clive, > How great to meet you! A lot of us parents of younger people with CHARGE wonder about life expectancy of people with CHARGE, how they've made out in life, how they're doing. It's great to hear from some people who are older who have CHARGE. I'd love to hear more about your life if you have time, when you were diagnosed, etc... > Take Care! > Weir > Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme > New Brunswick, Canada > Visit the " Weir homepage " at: http://www.geocities.com/kawfolks > ICQ #1426476 > > " When the tide of life turns against you and the current upsets your boat, don't waste your tears on what might have been, just turn on your back and float. " > -Anonymous > > > > Hi > > > Hi > > My name is Clive, 48 years old and suffer from CHARGE. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Hi The youngest of 3 children, I live in Farnborough, Hampshire, England. I was diagnosed as having a relatively mild form of CHARGE in 1994. I suffer from the following - Blockage of the passages at the back of the nose - blockage on one side Breathing problems - trouble swallowing Incomplete development of the external genitals, - hormonal problems. Conductive loss in the middle ear - partially deaf. Cleft palate Minor abnormal dental development Absent semi-circular canals (in the inner ear) this means that the balance sense is affected. Sleep Apnoea. My eyes are reasonably OK but I need glasses for distance and they are sensitive to bright lights. I have worked for the same local company for 26 years in a variety of roles and I hold qualifications to BTEC NC Standard (College Level). During my career I have held a wide variety of positions from industrial, through scientific to administrative grades. For the past two years, I have been working in human resources, as a Training Administrator, where I am responsible for the training records of 3,000 people. I am computer literate and have had experience of MS Office, the Internet and web page design. I am a volunteer with a national charity for the deaf called Breakthrough Deaf Hearing Integration (Southern Counties) and a member of another charity called Hearing Concern. I am also a member of a deaf church and a hard of hearing social group attached to Breakthrough. Although I have a limited knowledge of BSL (British Sign Language), I am keen to improve my skills in this area. I have recently become a co-opted school governor at a local junior school (7 to 11 years old) which has a partially hearing unit attached to it, and I am also a member of the Scouts Association with 20 years experience. Another major interest is that I am an amateur genealogist, where I am a founder UK member of an international one-name family history association. Check out my website www.cgmolyneux.net. My other interests include: Science Fiction, Astronomy, Camping, Walking, Music, Reading, Archery, Green Bowls, 10 pin Bowling, and Model Making > WOW, > > Hello Clive... nice to meet you! If you don't mind me saying I think you are > the oldest person I have heard of with CHARGE! You are inspiring! Thanks! > > Hugs > Kris - Mommy to - (Austin - Aug 23, 1999 - Sept 22, 1999 CHARGE) - > 16, ie - 14, - 13, new baby due in July > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Hi , nice to meet you to :-D > Hello Clive. Nice to meet you. > > Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Wow! You go Clive! Sounds like you let nothing stand in your way! You are just amazing. I bet it was a relief though to finally get a diagnosis. Keep going strong Clive. You have many friend here to back you in anyway. Take care. Hugs Kris - Mommy to (Austin - Aug 23, 1999 - Sept 22, 1999 CHARGE) - 16, ie - 14, - 13, new baby due July 17th Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2001 Report Share Posted December 5, 2001 Clive, What a life you lead! You sound like one busy man! I'm so pleased you decided to share your life with us, I know it personally gives me a lot of hope. We wonder so much about what life will hold for these little dears, and hearing stories from older people with CHARGE is so incredible. How did you find out about the CHARGE diagnosis? Did you get a new doctor who put it all together? Anyway, I hope you continue to post here on the list when you can! I'm off to visit your website. Hope you can visit ours, sometime and meet our little CHARGEr, Kennedy! http://www.geocities.com/kawfolks Weir Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/kawfolks ICQ #1426476 " When the tide of life turns against you and the current upsets your boat, don't waste your tears on what might have been, just turn on your back and float. " -Anonymous Re: Hi Hi The youngest of 3 children, I live in Farnborough, Hampshire, England. I was diagnosed as having a relatively mild form of CHARGE in 1994. I suffer from the following - Blockage of the passages at the back of the nose - blockage on one side Breathing problems - trouble swallowing Incomplete development of the external genitals, - hormonal problems. Conductive loss in the middle ear - partially deaf. Cleft palate Minor abnormal dental development Absent semi-circular canals (in the inner ear) this means that the balance sense is affected. Sleep Apnoea. My eyes are reasonably OK but I need glasses for distance and they are sensitive to bright lights. I have worked for the same local company for 26 years in a variety of roles and I hold qualifications to BTEC NC Standard (College Level). During my career I have held a wide variety of positions from industrial, through scientific to administrative grades. For the past two years, I have been working in human resources, as a Training Administrator, where I am responsible for the training records of 3,000 people. I am computer literate and have had experience of MS Office, the Internet and web page design. I am a volunteer with a national charity for the deaf called Breakthrough Deaf Hearing Integration (Southern Counties) and a member of another charity called Hearing Concern. I am also a member of a deaf church and a hard of hearing social group attached to Breakthrough. Although I have a limited knowledge of BSL (British Sign Language), I am keen to improve my skills in this area. I have recently become a co-opted school governor at a local junior school (7 to 11 years old) which has a partially hearing unit attached to it, and I am also a member of the Scouts Association with 20 years experience. Another major interest is that I am an amateur genealogist, where I am a founder UK member of an international one-name family history association. Check out my website www.cgmolyneux.net. My other interests include: Science Fiction, Astronomy, Camping, Walking, Music, Reading, Archery, Green Bowls, 10 pin Bowling, and Model Making > WOW, > > Hello Clive... nice to meet you! If you don't mind me saying I think you are > the oldest person I have heard of with CHARGE! You are inspiring! Thanks! > > Hugs > Kris - Mommy to - (Austin - Aug 23, 1999 - Sept 22, 1999 CHARGE) - > 16, ie - 14, - 13, new baby due in July > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 , Sorry you are all having a rotten time. Hope you are all feeling better soon. Hugs. Elaine mum to Elise (9 yrs) & Jack (4 yrs) CHaRGE Dumfries, Scotland Quote Link to comment Share on other sites More sharing options...
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