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Nickname	mrscliffy
Name	Tammy Clifford
Usernames	MrsCliffy2000 on Yahoo
Location	Arkport, New York
E-mail	tclifford@stny.rr.com
Comments	I have a daughter named Angelina. She is now 10and was born with IP. Boy the time fly's.. She is having a little trouble in school but we are working on that.
Home Page
Updated	10/24/2007

Nickname	mrscliffy
Name	Debbie
Usernames	BlessedByHer
Location	QLD Townsville Australia
E-mail	debbi_lee1@msn.com
Comments	I have 4 wonderful childen, Ty 14, Jack 12, Madison 8, Joe 10months, My only daughter Madison has IP. UPDATE. 31.07.06 I now have another son KC-jones another wonderful son.my childern are now 17 , 15, Madison 11 ,4, and 2 years old. We live in Townsville QLD Australia.
Home Page
Updated	7/31/2006

Nickname	leiyka
Name	leah haim
Usernames
Location	israel
E-mail	leiyka@hotmail.com
Comments	29 speech therapist with with IP.
Home Page
Updated	10/20/2003

Nickname	Isranunkel
Name	Linda
Usernames	Isranunkel
Location	Sweden
E-mail	lillaemilia@hotmail.com
Comments	We have a daughter, Emilia, born 13 th of June 2001 who is diagnozed with IP and another daughter born in December 2002, Alma, who has not gotten the disease. We live in Gothenburg, second largest city in Sweden. Emilia is a very intelligent kid who luckily so far has got rather few symptoms such as her teeth and a bit unruly hair....
Home Page
Updated	10/22/2003

Nickname	Kerry
Name	Kerry
Usernames
Location	Perth, Western Australia
E-mail	kerryeva@netfactory.com
Comments	We have two beautiful children, a boy 4 and a daughter 21mths who has IP.
Home Page
Updated	10/22/2003

Nickname	rlanemom
Name	Deb & Mimi
Usernames	rlanemom
Location	Indiana, USA
E-mail	scout10@kuntrynet.com
Comments	We have a son, Luke, who is 6 1/2 and a daughter, Rachel, who is 4 yrs. old and has IP. Rachel had a stroke within the first few days after birth and has seizures, which are currently controlled by medication. She "graduated" from First Steps last year and now attends an Early Intervention pre-school with other students with special needs at one of our elementary schools. Her eyes are stable (yearly exams now/wears glasses). Her biggest challenges are a result of the brain damage from the stroke. She is an extremely happy little girl (thankfully!) and brings joy to all who come into contact with her.
Home Page
Updated	8/1/2007

Nickname	Mom2ThreeIP
Name	Cindy
Usernames	rocknrollmama1972 for Y!, rocknrollmama31 for AIM
Location	Michigan
E-mail	mom2threeip@wideopenwest.com or rocknrollmama@wideopenwest.com
Comments	Hi there, My name is Cindy. I have three children of my own, Timothy, Mary & Anna. Anna is the youngest & my child with IP. It took several Dr's & 6 weeks to get her diagnosed. So far, the only thing she seems to have wrong with her is just purely cosmetic things, nails are funky, hair is crazy & frizzy, and she is small. Anna is a very clingy baby, not that I mind, because she is my youngest. I sure do love her with all my heart - as I do all three of my children. She turned THREE on 4/24/04 - and now weighs in at 34 lbs. She has only gained 2 pounds in the last year or so. I also have a web page along with a support board for IP. Here are the addresses for you: http://mom_2_three_ip.tripod.com/IP/index.html - I am having a VERY difficult time updating this site!! I have been RELENTLESSLY trying to update it since 9/03, but I have been having computer difficulty. As a result, the information here is OLD. Needs an update!!!! Above, is the link to Anna's page - all about IP & her. http://pub39.ezboard.com/bincontinentiapigmenti Above, is the link to the Support Board through EZBoard, as with here, you must be a member to post and joining is free & easy. Thanks everyone... Have a great week! Check out Anna's new pics that I just recently uploaded here and on her site as well. Updated her pics, they are from a zoo trip we took on May 19. ~ Cindy
Home Page
Updated	6/11/2004

Nickname	nattellen
Name	Natalie
Usernames	nattellen
Location	NSW Australia
E-mail	nattellen@hotmail.com
Comments	I have a healthy 2 1/2 year old son and a 4 month old daughter who has IP.She is a wonderful baby and growing well so far.
Home Page
Updated	3/14/2004

Nickname	AnIPMom
Name	Shari Ezell
Usernames
Location	North Carolina
E-mail	shariezell@hotmail.com
Comments	Allie is now 4 years old and was diagnosed at birth with a spontaneous mutation of IP. She has had several common and less common issues, but nothing severe. She suffered from very low muscle tone and still struggles with weakness primarily on the right side. She had minor bleeding in her right eye but no vision loss! She has the "Einstien Crazy Hair" (that's what we call it) -- but thankfully no bald spots. She does have bad scarring on her arms and legs due to severe blistering. She is missing many teeth and has a few mis-shaped. For the first 3 years she had problems with her immune system -- never went more than 7 days straight without high fevers, didn't respond to her immunizations (had to retake some), and went through several immunological test -- luckily she has outgrown this. Her sweat glands do not work properly so she does not sweat (which is awful since we live in the south and she is extremely active!). Cognitively she is ahead of the game -- atleast by a year. Physically she is small -- still only 27 pounds -- very pale, thin blonde hair -- the only problem we have is she doesn't know this and thinks she is about 6 foot!! She is a scrapper and will end any fight that is started! She is soooo incredibly funny -- loves to play jokes on people! And she'll be the first kid at your side if you need help. I hate the struggles she will face in the future, but I am sooo thankful for all she has taught me so far and all the wonderful people we have met only due to IP.
Home Page
Updated	10/24/2007

Nickname	marceybench
Name	Marcey& Randy
Usernames
Location	Farmersville TX
E-mail	marceybench@yahoo.com
Comments	Our daughter, Meredith, was born September 19, 2004 and was diagnosed with IP in 2 days. Had laser eye surgery at 3 1/2 weeks on her right eye to help her retina from detaching. Has done amazingly well. We have seen so many doctors - Dermatologist, Retina Specialist, Opthamologist, Neurologist and the best news of all is that it has been said that she has a mild case of IP (are there such things?). Such a rare and unknown disease so I am glad information is out there to help us through this emotional times. Meredith is our first child and we are unsure of having another. We are only an hour away from Baylor so we are planning on going through genetic testing to see.
Home Page
Updated	12/30/2004