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Jul 1, 2006
Salt Lake City
Hi. My name is Heather and I was diagnosed with ALS about a month ago. I'm only 27 years old so it is extremely odd for me to have this horrible disease. I was just wondering if there are any other females (or males) in the same boat as me.
My symptoms started about a year ago. I've been an athelete all my life and played collegiate volleyball. I now coach volleyball and play in rec leagues...that's where I started noticing differences in my strength and jumping abilities. Then the twitching started. Of course I had numerous tests done and everything was normal, including an EMG. My left foot started to drop in November and I was limping by Christmas. I had MRI's that ruled out MS and finally got another EMG...this one showed abnormalities. The doctors treated it as an autoimmune disorder for 3 months, but it didn't help. That and the fact that I had developed some upper motor neuron symtoms led to the diagnosis.
So here I am, just 27, with a disease that nobody can do anything about. But I tell you what, I'm gonna kick the hell out of it! I'm determined not to let this get me. My husband and I haven't started a family yet and we aren't going to let this deter us...we are still trying to have kids.
Anyhow, this is my story. I have a great husband, family, and friends to help me out. And for that I feel extremely lucky!
Thanks for listening!
Heather B.
Hi sorry to hear of your diagnosis. you will find much support here. I dont know anyone in their 20s with ALS but there certainly are some people.
There is a book I have been wanting to read, a young women diagnoseded at age 33 who then got married and had a kid is called "I remember running--the year I got everything I ever wanted-and ALS" by Darcy Wakefield. Perhaps you will find some inspiration in her book, my sis read it and liked it.
My husband was diagnoseded at age 40 and we thought that was young! You still have much living to do...good luck to you.
Thank you Beth! I just looked up the the book online and it looks great! Any bit of information like that can go a long way to helping someone, so thanks again!
So sorry

So sorry you have been faced with something like this at such a young age! You have the right attitude about continuing on living and doing the things you dream about. Some people may say you are mad for even contemplating children but I say you go girl! If your husband is behind you in this then go for it!

There is one girl in this forum (young gal - has her own website) who was diagnosed at age 22, I think. She will probably reply to your post soon. It seems hers is a very slow progression so hopefully your will be the same.

All the best and I will keep you in my prayers.

Thanks for the post Kazzy...
I think my sister heard of that girl in some of the research she has done. I'll be interested to hear from her and see if she has done anything special to ward off the disease.
My husband is very supportive--he's my rock! And my family is great too, so I know when I do get pregnant and have a baby, they will be there for us. But thanks for the encouraging words because you're right...many people would think we're crazy! But, hey, I can't stop living my life!
Hi Heather,

My wife is a little older than you (41) which puts her in the one in a million category like yourself. She shares in your athletic background. Gail has been a horsback rider and was in a half-marathon training clinic when a inner-thigh injury led us to her diagnosis in March of this year. Her symptoms started with the Right leg - and definately has the foot drop issue.

Heather, I'm shocked at all the young people with ALS that I'm finding on this site and other places.I'm 58.Seems like you have a good attitude and that will help.I wonder what would cause someone so young as yourself to get this illness? Does anyone else in your family have it?I'm also finding a lot of athletic people with with this disease,not includind myself.The other person in my town with als has had als for 20 years? So not everyone is short term. Myself and my wonderfull caregivers are so sorry to see you here. But since you are here we wish you the best! Barry
Hi Heather,

Jeannie is a member of this forum. She is 27 and was diagnoseded with ALS in 2001.

Check out her profile.

She has a web site too.

Jeannie where are you?

I have read your post and I am so sorry that you have learned that you have this disease. I am glad that you found this board cause it is full of advise, angels, just a wealth of information from so many wonderful people. I agree that you should go with your plans DON'T let anything stop you. You have a great attitude and I am one that believes that with this disease mind over matter is the key.... Keep up this attitude and if days come to you when you feel otherwise remember to post and you will feel better.

You are in my thoughts and prayers...
Hi Heather:
There is a patient here in Toronto who also was diagnosed at an early age and managed to have at least one child. Granted, there is a difference between a female patient going through the stresses of child bearing and a male but they, as a couple persisted.
I hope that you are successful... and that your progress is slow enough for you to enjoy your kid(s). If your journey ends before they turn into teenagers... you will have managed to have all the fun before the retribution starts!


Hi Heather

Have you had or considered any genetic testing?
Hi Heather,
My symptoms started when I was 29 and I was diagnosed at 30 back in '93. Since then we have had two beautiful children and have lived our lives as "normal" as possible.

There seems to be a correlation between young(er) people getting ALS and athleticism. I don't know why, but most young PALS I know are very physically active before getting this.

Keep your fitness up, with yoga, tai chi or will benefit you later on! ALS is only a blip on your life's radar screen. How big a blip depends on your focus. You sound like you're on the right path!

Good luck and keep on this board! We have lottsa good folk here!

BTW-did you get a second opinion? There are quite a few treatable diseases that look like ALS, but are not. I had seven different second opinions!


Oh my goodness, Mike you are another one that has beaten the odds! Good on you for keeping on with your life with your wife and having 2 beautiful children.

There does seem to be a connection with athleticism and younger diagnosis but is there maybe also a connection with younger age onset and longevity?

Interested to hear others' opinion on this.

I am 41 and from what I've read this is very young too considering I've been having symptoms as far back as 4 years ago(in hindsight). I was also rather athletic when I was younger and became very obsessed with body image and pumping weights after having children and not really liking the shape I had become.

Then I had mono which they at first thought was some rare, acute form of leukaemia and was hospitalised. Have never been the same since and pushed myself back into rigorous training to try to make myself better but I think there is a lot to be said about overdoing it and what effects this may have on the body!


Thank You!

Thanks to everyone for your replies to my message. The encouraging words do help so much.
Kazzy, I hope you're right about diagnosed at and early age and longevity...that's what I'm holding out for!
Mike, you're a good example to me and how I can live my life with this disease!
Stephen, what do you mean by genetic testing? Do you mean to see if I would pass ALS on or what?
Thanks again to all!
Heather, The 5 to15% of als that is caused by genetic defects they have found 20% of the genes responsible. If you have someone else in your family with als a parent ,grand parent you would probably want to be tested.Their is a test available for this. Hope this helps. BWK
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