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hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
Life is about health, family and friends, but sometimes its hard to keep focus on what is most important
I have an eight year old son with Aarskog syndrome, and we are having a very difficult time trying to find support groups or even basic information on this disorder. I was told that there have only been about 100 diagnosed cases of Aarskog Syndrome in the world, and I find it hard to believe that’s true.
Is there anyone else who is dealing with this disorder?
Please help.
My 15 year old son has Aarskog. Both my daughter and I are carriers.
Have two sons with Aarskog Syndrome and would like to connect with adult males and/or parents of male children living with this condition. Am interested in learning about how Aarskog Syndrome affects their lives and how difficult it is coping with this rare disorder.
Hi everyone, my name is peter I am 61 years old with one daughter aged 28 and it wasn’t until 4 years ago when I found out that I have the Aarskog Syndrome. We found out about it when one of my grandchildren was diagnosed with it. There is a lot of info for children with it, but hardly any for someone of my age! Can the Syndrome have any effect on Arthritis for instance, can it make it worse or any other elderly symptoms (if you know what I mean )
I have this syndrome. I’ve been very lucky to have fewer of the more dramatic symptoms but i think people should be careful not to over-associate. I’ve noticed that many worried parents are attaching things that may have no direct relationship with the aarskog syndrome. I like to hope that i can bring some support for parents with young aarskog affected parents as i am in my twenties and would hopefully bring a more life learned perspective of the syndrome and its difficulties.
My son Alan has Aarskog, he is 39 now, whilst he himself prefers not to be on the site, (he prefers to just get on with his life, albeit with difficulties sometimes) so I his mum like to know whats going on!, Is Alan at 39 the oldest out there?.. I wonder. I would like to connect with other Mums of older Aarskog, or themselves. Thankyou. Barbara Whittaker.
I am the mother of 4 with atleast 3 of my boys having A.S. my twins which are now 16 were diagnosed at 5yrs old the oldest twin has many health problems… ie mettatarsus adductus which is the bones in his feet are very curved almost S shaped, he had sleep apenia at 6 wks, had severe emotional issues and severe nose bleeds which are diminishing with age, but he now suffers from intestinal problems, and Adult Polycystic Kidney Disease which causes high blood pressure and cysts in many different place and will eventually lead to renal failure and kidney transplant. He also was born with a heart murmur which is functioning he was only a 2 vessel cord baby, he still has some Obsessive compulsive disorders from working through the emotional problems, he has sensory issues which led to the emotional problems, so alot of them have subsided with age and the help we have had and have worked together on.
His twin suffers from severe migraines, and is pigeon breasted and much smaller in size now but realatively normal, not as affected as his brother.
I then have a 14 yro old that may not be affected, he suffers from adhd and some emotional issues, and is quite small but seems otherwise pretty healthy!
I then have a 9 yro that has severe sensory issues, noise lights, feel, and also has some learning disabilities, mainly writting, is adhd due to learning disabilities and mood disorder, possibly bipolar, were trying not to label him with anything, until he is older, he does have very euphoric tendencies… like laughing one minute crying the next, has no sense of personel space at all!!! AND VERY IMMATURE He also has intestinal problems suffers from mega colon, and is an insomniac, which is being taken care of with the mood stabalizers he is now on, he actually tells me that he wants to sleep , for 8 yrs we didnt really know sleep without trazadone, and then he fought sleep untill it floored him,by dropping his blood pressure which wasnt good for him, so now we dont take that at all anymore and he actually sleeps allnight long, and doesnt want to get up to early in the morning either lol
Well I am sure some of this sounds quite familiar to some of you, let me know if there are things that some of you are expeiriencing that i have not mentioned, or if i can help with some of what I have mentioned, Im more then willing to be of assistance Thanks Anne
Hi My name Jackie Orr,I have a 11 year old son with Aarskog Syndrome. I was told when he was 2 year old. In the last 9 years my son he has learning differents and ADHD. My big worry is that my son is going to start big school in setember this year which i think he will find hard due to short high and learning differents
I am the grandmother of a 21 month old boy with Aarskog. I want to learn all I can about the condition. I want to communicate with people who have children with this genetic syndrome.
I have children with Aarskog syndrome
I my name is Jenny Gonzalez and i am interested in this condition because i have had it all my life and i don’t know a thing about it. I would like to know anything and everything about it. Also i would like to connect with other people who have it and see what kind of other symptoms this disease has.I am only 20 years old, I have 2 kids and another on the way and i would like to know if they can have the same thing that i do, and if they do if there is anything i can do to help them cope with it.
Any Asians here with AS?
i blog abt my son here
http://www.parentsphere.com/user/danialwan
Ummi2D
Singapore
i am dating a man that i think may have this syndrome,i havent yet asked him. i think he may be scared to say anything to me.I have really fallen for him and want to understand and know him better
Hi i have a 14 month old son that was just diagnose with this syndrome, i also have 6 year that they also want test out for the same thing. I will just like to know what are their future looking like.
I have a son with Aarskog and want to keep upto date with other information other than what I have and If anyone has new information.
Hi. My name is Alex [alias Gypsy].
Recently my grandson Blake was diagnosed with Aarskog Syndrome. Blake is 10. Such a relief to finally have a diagnosis as for years my daughter Sam and myself have battled with all kinds of senarios in regards to Blakes learning and development.
We are now very lost!
As Blakes grandma I am his main carer and also home schooling teacher.
To date we have received information on what the symptoms of this syndrome are yet nothing on the effects of this syndrome.
Hence we are seeking as much knowledge as possible and would love to connect with other mums, dad,s, grandparents, siblings and anyone else that may be able to shed some light.