Welcome

[Lisa Salberg]

Our younger posters have asked for their own "room". So we have added this new space just for them.

You are all welcome to post here - but lets try to let them talk with limited input from adults.

OK guys - keep your room clean and have a great time!

Please remember something....I was diagnosed when I was 12. I may sound VERY old to you because I am nearly 36 years old... however my teenage years seem like yesterday and I know all too well some of the issues you are each dealing with. From time to time I will share a story from my experience with HCM in school, dating, finding a job and other things that you too may be going through. I will never tell you what to do or tell you how to act...but I will share some thoughts and ideas with you.


Be well,
Lisa

[AngelAlie27]

Lisa, Just "hanging out" and found this new spot. Great idea for the young with HCM. I'll get things started.
I'm 17 and I have HCM but not in the way many of you may have "it". I do not have any symptoms yet but know that I am "genetically positive" for the disease. My mother, grandmother, aunt, uncle, sister, and several cousins have HCM. Stay positive, learn all you can about it, do all you can to let other people know about HCM, and get involved with this great group of people.
I went to the annual meeting this year--got back just a few hours ago. It is a great way to stay informed. Maybe some of you can come next year. Look forward to seeing you there. Maybe we can go to a movie or to the pool as a group and "hang out " instead of staying for ALL of the meeting.

Cynthia Patterson

[Reenie]

Cynthia, I was really happy to meet you this weekend. You keep up that great attitude! :)

Reenie

[murrayfan33]

I enjoyed meeting you too, I hope you keep that kind of fire in you!!!

[Toogoofy317]

Hey! I've only got a few days left of being young enough for this board. I'll be 24 on Saturday. Geeze I'm getting old. But anyhow I'm still in school and I'm still facing a lot of the battles that you youngins are going through.

You can PM me anytime!

Mary S.

[ginnilea]

Well, I feel pretty special. I am a 22 year old female. I am one of the young ones but after all I have been through I feel a million years old.

I was diagnosed before my last semester in college. If anyone understands the social aspects of HOCM I do. :oops:

This is the first summer I have begun to wear my tang tops which show my scars. For once I am not melting under the sun. :lol:
I have managed to travel through this journey with my fiance who became my husband in the last year. We just spend a lot of time talking about HOCM. It is important we share our fears, keeps us on the same page. Well for you young ones, share at anytime. I know I am listening and feel free to instant message me.

Ginnilea

[cheerchicken05]

Hey--
I'm 16 and was diagnosed this february (feb 6 of 04) and had an ICD last monday (6/7/04) and man its been such a fastm suprising, crazy mess. i also went to see dr. barry maron in march, so its been a CRAZY jam-packed 4 months.

unlike cynthia, i have had symptoms of chest pains and shortness of breath to the point where i pushed and pushed my mom to bring me to doctors. talk about misdiagnosis!!! first it was asthma, then more severe asthma, then arthritis in my chest, then both, they they said "hey why dont you get this picture taken...just incase. during the first echo i had the tech asked,"no doctors or pediatricians ever saw this" i was like mmm whats going on!?

the hardest part has been being pulled out of cheerleading. i was a hardcore cheerleader both just for games (yawn!) and VERY competitively. of course i was a base (i throw people), and of course i was finally succeeding in gymnastics, and of COURSE i was pulled out flat out in the middle of the competition season, and right before our biggest comp...that i was supposed to compete in an individial stunt group...
...that was a blower for me AND my team...
...not to mention one girl commenting to my best friend & the girl i threw (she was really upset too) "yeah i dont care when my stunt partner gets pulled out.." and "my docter tells me not to do anything (she has bad asthma) and i still do it..."
but some people you just gotta brush off your shoulder (dont start singing the song!!!)

[Lisa Salberg]

Hey guys,
Friends sometimes just do not understand this and it can really get to you. I know when I was in school and even as an adult my friends get frustrated with me when I can not keep up or I can not do what they are doing. It has caused more than one fight between us...which normally ends with them saying 'I forget that you have something wrong with you' and then I remind them that I never get the opportunity to forget and that I wish I could...they cry ... I laugh it off and we put it behind us and move on.

Help teach your friends not to fear HCM, but to understand it.

Hang in there guys!

Lisa

[cheerchicken05]

yeah my friends have been really great about dealing with me lagging behind. i went to orlando and a few of my close friends made sure they stayed with me and would stop when i needed to. some people still dont get it though, but hey...then again i dont either...

[ise2425]

hey guys I'm 16 and also have HCM. I was diagnosed when I was 13 and since then my septum has persistently grown, albeit not to a very dangerous level. however with the impending summer my doctor's thought it better to have an ICD and get rid of the possible sudden death feature.
Steven

[AngelAlie27]

Hi everyone,
So sorry to hear about everyone's problems with HCM. I had a checkup yesterday with Dr. Wang and I am still looking good--no problems, numbers look good and septum is .6.
True friends will stick by you no matter what. Try to educate the others about HCM and how dangerous it is for you to be super active. I'm currently letting everyone around me know about the need for AED's in public facilities and in schools. (Lisa, I have raised $12,410.00 for my project!!!)
Hang in there, learn all you can and be all you can. Remember, when God closes a door, somewhere He opens a window. Find your window and "hang out".

Cynthia

[Reenie]

Hey Cynthia! I love that last quote. Can I use it sometime? :)

Reenie

[AngelAlie27]

Hi, Feel free to use it anytime.

Cynthia

[Lisa Salberg]

Cynthia,
I am so proud of you and all you have done! It is young ladies like you that will change the world!

Big hugs!!!!!!!!!
Lisa

[karen]

Hi,
I'm really too old to be in this part, but thought I would just say I think it is great to have the new board. I didn't realize it was here till about a week ago. I will tell Sarah, she is my daughter and is 13 and was diagnosed last year with HCM.
Thanks Lisa

[Anonymous]

Hi i just found this place. I am 19 years old and was diagnosed two years ago. I have never experienced any symptoms my specialist and every other docter who has seen my stats can't believe it, because of how thick my heart walls are. I have always been physically active and it is hard to avoid exercice. I am about to going to get a diffibulator at the end of the month and I have doubts about it. will it allow me to resume a more active lifestyle.

[Lisa Salberg]

Guest - Welcome to the HCMA. Will an ICD allow for a more active life style - not really in those terms. It will protect you from sudden death. If your heart is very thick, which it sounds like it may be, it may be in your best interest to find activities that are better suited for your heart.

Please feel free to call the office to discuss this in more detail. I was 12 when I was diagnosed, I was very active - I was 22 when I had my first pacer implanted. I had minimal symptoms in my teens - and only upon looking back was able to see 'symptoms' that I thought were 'nothing' at the time.

I really do understand your concerns. FYI Life with an ICD is no big deal - I do everything I want to do! I have had an ICD since 1997!

Take care!
Lisa

[Tim]

cool now i am signed in.

Thanks for the feed back i am just a little nervous about the sugery it is just happening so quickly. Two years ago i was swimming miles and biking past my freinds then im here.

it is all just a little intimidating.

thanks
Tim