my name is Joel Terrell II, I’m from Atlanta, GA. I have been having serious episodes associated with KLS since Feb. 6, 2007 and was formally diagnosed with KLS, Narcolepsy, & Cataplexy three days ago. I’m not sure what types of studies they are doing to make steps in helping people with KLS, but it is definitely needed. I’ve been fired from 3jobs because of the episodes (which last from 2 days to a month) and unable to maintain my bills and take care of my son. if anybody has information or advice please share!

I don’t have any information, really.  My son was diagnosed a week ago with KLS so we’re still brand new with those.  This website has a ton of information though that was helpful to me.  A gal from this site called me and told me there was a study going on at Stanford that we could do.  I need to look into it some more as we have had a long week full of doctor’s appointments that left little time to do much else. 

Sorry I don’t know much of anything else.  I just didn’t want your post to go unanswered.  Good luck to you and I hope you get some answers ASAP.

thanks for replying. I’ve spoken with the guy from Stanford thru email, but he doesn’t think I’ll be able to help in the study because my disorder is so complex. I hope i am able to because I want help anyone who is dealing with or may have to deal with this in the future. I pray my son doesn’t have to go thru this and wish you and your son the best. Thing will get bad for a while but eventually they will get better just stay positive and help him understand.

Hi Joel,

I have a daughter with KLS. I’m sorry to hear about your struggle.

One thought I have for you is that you apply for Social Security Benefits. I believe there are two kinds of benefits. One is called Title 2 and that is for people who have a work history. The other benefit is called Title 16, Supplemental Security Income (SSI), for people who have little or no hours of work.  The website is http://www.socialsecurity.gov or you can phone them at 1-800-772-1213.

Good luck and please post any questions you may have. Everyone wants to help.

Wishing you health!

Diane

Hi Diane,

I have tried SSI and i was informed that because i work, i am unable to receive any assistants. they dont understand how many days of work i missed, nor the stress it causes. i’ve been on my current job almost 1year and have missed over 2months worth of work dealing with my condition. i try to keep a level head and i’m trying to manage things myself because none of my doctors really know how to treat KLS or Cataplexy. i’m currently taking Provigil for Narcolepsy but i feel i dont need it because based on their studies, i was diagnosed because it takes an average person 8 - 10 mins to start dreaming once they go to sleep and i begin dreaming in 3 - 5 mins. right now i’m just lost and trying to get things under control in life. thank you!!!!

Hi Joel,

Have you talked to Social Security about the work related social security. I’m so sorry you have to deal with all of this right now. I wish there was something I could do to help you. I can’t imagine how hard it would be to have to work through this. There is no possible way to work on the days you’re sick. Have you applied for any social security benefits. I don’t think it would hurt to get the applications and fill them out. If you have examples of how much work you have actually missed because of your illness, maybe they’ll take a look at your case. If you haven’t filled out the paperwork yet, it may be worth a try. I’ll do my best to help you fill out the forms once you get them. Let me know if you need some help in that department.

Best wishes for a speedy recovery from your illness.

Diane

I have spoken with them over the phone and in person. The told me i work to many hours to be able to apply for ssi. they have my information on file but right now i dont know what else to do. Its hard enough trying to deal with day to day life but living in fear of going to sleep is worst. i miss an average of 3 days per 2 weeks pay period, i’ve been at my job almost a year and have missed over 3 months while dealing with this and constantly have to explain to my boss my situation and deal with bs from co-workers and other people i try to explain things too. they think i’m using this as an excuse and the fact that i’m a young african-american male they assume i don’t want to work anyway but thats not true. right now i just want to help find a cause and cure so other people dont have to feel this way. thanks for your support, its hard to find people who care and understand (my family doesnt at all).

Hi Joel,
Yes, I understand now about the SSI. I wonder if the other benefit, would work for you. I think there is a benefit for people that work too. With this benefit it doesn’t matter about the income that you’ve made. What matters is if you can still work that same amount of time or not. And if not, I think there might be a benefit to cover the difference. I’m not sure how it works. If you want me to do some checking on it, I will be happy to. Just let me know, and I’ll call the office to see what the different benefits are.
I know you are not lazy. That is such a frustrating misunderstanding of this illness that the KLS sufferer has to deal with. People also do not understand that this illness is cyclical meaning it happens over and over again and I think they think the KLS patient is faking it or making excuses. That is so painful to have to deal with. And what’s even more painful is if your family doesn’t understand. I’m so sorry that you have to go through this. I know how awful it is to have your family not understand or support you.
I have talked with many people about this illness. And it does go away. I wish there was a cure now and I wish you could heal from it now. But just remember this illness is going to go away one day. You will heal. You are a very strong person. I’m glad you found this sight so that you can get the support you need. Take Care.
Diane

thanks for your support. if you could look into that for me, i would greatly appreciate that.

Hi Joel,  Sorry it’s been a long time in getting back to you. It is somewhat difficult to get SS disability but it is definitely worth trying if you have not applied. I found a good website that answers a lot of questions. It is http://www.disabilitysecrets.com. I hope this can help you. Keep all your medical records for the future, should you apply at a later date. Wishing you health and happiness. Diane

jtterrell - 21 February 2008 08:35 PM

my name is Joel Terrell II, I’m from Atlanta, GA. I have been having serious episodes associated with KLS since Feb. 6, 2007 and was formally diagnosed with KLS, Narcolepsy, & Cataplexy three days ago. I’m not sure what types of studies they are doing to make steps in helping people with KLS, but it is definitely needed. I’ve been fired from 3jobs because of the episodes (which last from 2 days to a month) and unable to maintain my bills and take care of my son. if anybody has information or advice please share!

OH! My daughter was diagnosed with narcolepsy (without cataplexy) and KLS. She does NOT have the most common genes as supposedly 95% of those diagnosed with narcolepsy have. Were you also positive for those most common Narcolepsy genes or are you one of the 5%??

My daughter has a hard time in college because of missing so much. She is going slowly but surely and now has 2 associates degrees and working on a BS… but that may take yet another 4 years. The combination really is the pits.

A lot of different tactics have helped her somewhat (nothing completely, but her life is a lot better). You may want to look for the link to list of resources on http://www.ItsNotMental.com and also for the narcolepsy, there is the Talk About Sleep forum http://www.talkaboutsleep.com . Xyrem may help the narcolepsy part… but I doubt it will help the KLS part.

One of the things mentioned a lot on It’S Not Mental is hormones and inflammation, and nutritional supplements. T3/T4 thyroid hormones in optimal ration and upper levels helped, and she takes 2 doses of Provigil & Wellbutrin during the day (Early morning and again right after lunch).

She at least has help financially. I suggest applying for SSI/Disability for now.

These things are just so unfair.  I cannot imagine trying to take care of your son on top of this, AND trying to work a job. I have the same fear for my daughter. She is planning a career where she can more set her own hours. But I also hope that she keeps feeling better and better. However, it doesn’t take missing more than a few days of work a few times to lose a job.

-Naomi