Post

I Have Trichorhinophalangeal Syndrome Type 1

A Trichorhinophalangeal Syndrome Type 1 anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Trichorhinophalangeal Syndrome Type 1. You're not alone. 4 People

    My Grandson Was Stolen...........

    In days gone by women married, had children and stayed at home and raised them while the men went off to work and made money to take care of the families needs.  It's only been in my generation that things changed.  My parents were dead set that I was not going to college...
    blutoo blutoo 51-55, F Mar 3, 2012

    Your Response

    Cancel

    Related Experiences

    My Battle With Marfan's Syndrome I am a Marfan.. i.e. I have Marfan’s Syndrome. It is very rare and most of you reading this might not have even heard of it. I never knew that I...
    Eddiecrow Eddiecrow 41-45, M Jun 29

    Your Response

    Cancel
    Hi, im Hollie im 14 and I've had Duane syndrome since I was born. Because of my Duane syndrome it means I can't move my left eye at all to the left. This really annoys me because...
    HMace HMace 13-15, F 1 Response Jun 30

    Your Response

    Cancel
    Hello! I'm Kristina, I'm 18 years old. In February this year I was diagnosed Swyer syndrome. Although I'm trying to get used to require me to help people who know I'm going through...
    kika96 kika96 18-21, F 1 Response Jul 8

    Your Response

    Cancel
    4 months I had rotator cuff surgery with a full recovery expected. Needless to say after several phydical therapy tratments and pain meds I had little to no relief. Finally after...
    fancyface19 fancyface19 46-50, F 1 day ago

    Your Response

    Cancel
    Ugh the struggle of stairs. With my hyperventilation I feel like Hazel Grace when she makes it to the top of the Anna Frank in the Fault in Our Stars movie. Literally one flight...
    kelizabeth13 kelizabeth13 18-21, F Jun 25

    Your Response

    Cancel
    I have a tilt table test and a head MRI scheduled for next week. They are trying to completely diagnose with POTS even though I have already been diagnosed. With my severe anxiety...
    cassidybute cassidybute 18-21, F 3 Responses Jun 28

    Your Response

    Cancel
    Calling all POTsies! Follow my POTs story to see how i have coped and have found my remedies. I am sure it is helpful! check it out. www.potsisthepits.com
    cassidybute cassidybute 18-21, F Jun 29

    Your Response

    Cancel
    Hi When I was pregnant 5 years ago I had this urge for rubber, the smell and taste of it! All through my pregnancy I chewed on rubber bands, I then found it wasn't enough so I...
    Louloub1969 Louloub1969 41-45, F Jun 30

    Your Response

    Cancel
    I just realized that I still have pica. I thought I was over it a long time ago, back in 5th grade. I thought I was done with the grass, the dirt, the sticks, the hair-sucking...
    Boo37 Boo37 13-15, F 1 Response Jun 30

    Your Response

    Cancel
    I have been diagnosed with female Aspergers
    prettybum prettybum 18-21, F 1 Response Jul 7

    Your Response

    Cancel
    I don't know if this Aspergers or not. I don't know if I'm over reacting or I what. I have a friend I used to live with. She had to go home and plans were made for me to go back...
    Sakaratte Sakaratte 26-30, M Jul 12

    Your Response

    Cancel
    I've always had really bad craving for sponge. I never eat it because my friend went to the hospital for exactly the same reasons, but I can stop the urge to eat it by smelling the...
    meganbxiley meganbxiley 16-17, F 1 Response Jul 14

    Your Response

    Cancel
    I was diagnosed when I was about 9, and it apparently makes it difficult for me to socialize. While it is true that I have an extreme difficulty, if not total inability, to make...
    Varof Varof 18-21, M 1 Response 3 days ago

    Your Response

    Cancel
    Well I had my first unplanned trip to the hospital on Saturday. Basically the heart murmur I have had for awhile finally did something bad and I ended up being wheeled into an...
    MattsShadow MattsShadow 18-21, M 2 days ago

    Your Response

    Cancel
    This is a follow up for my story "what doesn't kill you makes you stronger" My name is grace. I am now 16 years old and I just got my correction surgery last week! I had a muscle...
    marinagrace marinagrace 13-15, F 1 Response 2 days ago

    Your Response

    Cancel
    It started with me getting these high pitch squeals. Like a surge up my spine and unless I concentrated hard, it would come out. Usually when I was most peaceful it would suddenly...
    Skywalker1979 Skywalker1979 31-35, M 1 Response 1 day ago

    Your Response

    Cancel
    Type II (that Ii in the title just bugs me) Yeah so I don't get crazy manic very often, just hypomanic from time to time, but when I do depression, oh I do it well. Deep deep...
    ThePeach ThePeach 26-30, F 1 Response Jul 14

    Your Response

    Cancel
    I hate it. Some days I just feel angry and almost suicidal. Other days I feel like I'm on cloud 9. And my meds, even with insurance, are so expensive!! I just wish I was normal and...
    Nikki351 Nikki351 31-35, F Jun 26

    Your Response

    Cancel
    Well, I've always had headache and back issues. We just kind of assumed it was genetic or something. Finally, about 4 months ago, my headaches became unbearable along with my back...
    jfernau jfernau 18-21, F 3 days ago

    Your Response

    Cancel
    okay, I've never told anyone about this and I'm only 15 for a few years I've had an excessive habit of eating graphite, rocks, baby power, sand and charcoal. I literally break...
    aarlert aarlert 13-15, F 1 Response Jul 7

    Your Response

    Cancel
    LOL!! MUST READ!! Pica : is most common for 2-3 year olds but I'm 10 so I can't stop eating paper or my crazy loom bands! I've been biting my brothers arm sometimes I bit a little...
    bela5562 bela5562 13-15, F Jul 7

    Your Response

    Cancel
    Www.potsisthepits.com I promise my blog will inspire And enlighten those with pots!
    cassidybute cassidybute 18-21, F Jul 11

    Your Response

    Cancel
    Hello, My dad was recently diagnosed with melas. My family and I are struggling to support him and ourselves. Is there anyone out there (particularly in Australia) that wants to...
    hellokat33 hellokat33 18-21, F Jul 14

    Your Response

    Cancel
    It's bad, real bad I think. It started two years ago when I walked home from school with my friend and we passed a construction sight with piles of dirt and rocks. There was this...
    BlackPaint0000 BlackPaint0000 16-17, F 1 Response a week ago

    Your Response

    Cancel
    I went to the doctors today to check up on my lymes. Last Time I was in there they re tested me to make sure I had it we got the results today and it came back negative. But Iv...
    Megan2020 Megan2020 13-15, F Jun 26

    Your Response

    Cancel
    I went to the doctors today to check up on my lymes. Last Time I was in there they re tested me to make sure I had it we got the results today and it came back negative. But Iv...
    Megan2020 Megan2020 13-15, F 1 Response Jun 26

    Your Response

    Cancel
    I have asbergers syndrome and I always feel like a outcast.I was bullied in middle school,because I had no friends.I had to get diagnosed 2 times,because teachers didn't believe...
    AuroraSunny AuroraSunny 16-17, F 4 days ago

    Your Response

    Cancel
    I have so many types of friends. I accept anyone. no matter who you are or what you do. i try to look past peoples pasts. whats in the past is not important anymore. At school i...
    cloakedgarden cloakedgarden 13-15, F Jul 5

    Your Response

    Cancel
    I haven't been on here in some time. Been a bit busy I'd say with life and figuring out things even more so than I expected. I think it's good to witness and experience life to...
    flibsley flibsley 31-35, M 1 Response Jul 9

    Your Response

    Cancel
    I have a rare type morphea profunda it has caused a 4 cm by 4 cm atrophy on my left hip. I was just diagnosed am a little frightned the doctors are running a lot of blood work to...
    saunders24 saunders24 22-25, F 1 day ago

    Your Response

    Cancel
    23+ years ago I was diagnosed with MS, even though I never had a positive test. No blood test, MRI, spinal tap,etc was ever positive for MS. My symptoms were never an exact match...
    bonsaigirl bonsaigirl 56-60, F Jun 29

    Your Response

    Cancel
    After 21 years of marriage, my wife wanted me to take another woman out to dinner and a movie. She said, “I love you, but I know this other woman loves you and would love to...
    sapphire601 sapphire601 31-35, F 10 hrs ago

    Your Response

    Cancel
    And She is sitting right beside me as I type this Help me
    Dynamite500 Dynamite500 18-21, M 6 Responses 8 hrs ago

    Your Response

    Cancel
    I used to think I was adopted. I have 5 siblings, and they each have several thick photo albums from when they were kids. I have maybe two photos from when I was a kid, but no baby...
    Solfeggio Solfeggio 36-40, F 1 Response Jun 24

    Your Response

    Cancel
    I have never heard of it but apparently its an obsessive disorder and people with borderline personality and anxiety disorder have it. I don't know how i am going to stop because i...
    Gentleandlovingsoul Gentleandlovingsoul 36-40, F Jul 1

    Your Response

    Cancel
    I have EDS and chronic joint pain. I also have Tendonitis. I wonder if my Tendonitis has anything to do with my EDS.
    elenanicole elenanicole 16-17, F Jul 11

    Your Response

    Cancel
    My Battle With Marfan's Syndrome I am a Marfan.. i.e. I have Marfan’s Syndrome. It is very rare and most of you reading this might not have even heard of it. I never knew that I...
    Eddiecrow Eddiecrow 41-45, M 1 Response Jun 29

    Your Response

    Cancel
    For about a year I've been considering divorcing my wife of nearly 8 years. Our relationship has never been great. We are great friends, but horrible lovers/spouses. We do things...
    randomtiger45 randomtiger45 31-35, M 1 Response Jul 1

    Your Response

    Cancel
    My daughter is a little over one year old. ( I don't like talking in months)She has Down Syndrome. I don't treat her differently from my other kids. Her needs are a little...
    Kryzta Kryzta 26-30, F 1 Response Jul 8

    Your Response

    Cancel
    My husband has Asperger's Syndrome. I am having a difficult time with our marriage. We have been married two years. He is a good provider and has good traits, such as being...
    Solfeggio Solfeggio 36-40, F 4 Responses Jul 11

    Your Response

    Cancel
    My husband and I were in a motorcycle wreck in Feb. (2 days after our wedding in India). I'm interested in getting to know other people dealing with Compartment Syndrome, in hopes...
    JenniferLakhlani JenniferLakhlani 36-40, F Jul 13

    Your Response

    Cancel
    Over a year ago I was diagnosed with Postural Orthostatic Tachycardia Syndrome. I've battled high school with this non curable disease, but I now I graduated and it is time for me...
    heyycutie16 heyycutie16 18-21, F 2 Responses Jul 13

    Your Response

    Cancel
    OK! I don't believe then this not more out here for women with Ovarian Remnant Syndrome. I was told 12 yrs ago I have ORS and have had 5 surgeries to take the remnants out. I still...
    Julieban Julieban 46-50, F 1 Response Jun 25

    Your Response

    Cancel
    UK SUFFERERS - PLEASE GET IN CONTACT! So, I've never really wanted to write my story. Not because I am afraid or ashamed, but because I am so bored of talking about it, it makes...
    scharx scharx 18-21 Jul 1

    Your Response

    Cancel
    UK SUFFERERS - PLEASE GET IN CONTACT! So, I've never really wanted to write my story. Not because I am afraid or ashamed, but because I am so bored of talking about it, it makes...
    scharx scharx 18-21 1 Response Jul 1

    Your Response

    Cancel