November 30, 2009 5:21 pm at 5:21 pm #590873
I know someone who could use a frum support group for people with Epilepsy & seizure disorders. Does anyone know of any in the tri-state area? Or how they could find one? Thank you, tizku l’mitzvosDecember 1, 2009 5:59 am at 5:59 am #669171December 1, 2009 12:04 pm at 12:04 pm #669172
I hope that the moderators will allow me to post a link here.
This is a good website with links to support groups and information pages.
Note that it is a tandard Medical Center page, and has nothing to do with anything
religious. However, in the NYC area, people are well acquainted with the desire to have a support group within a given community, and you could give them a call.December 1, 2009 3:12 pm at 3:12 pm #669173
Thanks, but my friend specifically is interested in a frum support group, or at least a Jewish one. She heard about these websites already. She has a child who has seizures and is in the yeshiva system. She needs to connect with people who are going through similar situations and understand the trials, and fear, and other issues that come up with having large families and having an unwell child to care for at the same time. Also, she does not have her family support as she cannot tell her parents/in laws about it for various reasons, again something that a frum support group could help with. If you know someone who is going through this, please ask them if they know of any support groups and update here. Thanks again!December 1, 2009 4:01 pm at 4:01 pm #669174charliehallParticipant
I work with frum neurologist who specialize in epilepsy. They have many frum patients. I will ask one of them if they know about any support groups like this.December 1, 2009 4:06 pm at 4:06 pm #669175charliehallParticipant
I just called a colleague who is a frum neurologist specializing in epilepsy with many frum patients. Unfortunately, she did not think there is any support group for Jews with epilepsy.December 1, 2009 5:15 pm at 5:15 pm #669176
thanks charliehall. Keep asking around if you can.December 1, 2009 5:16 pm at 5:16 pm #669177
There’s a support group called “someich noflim” in the chassidishe community.
I can find out their phoned number if you’re interested.December 1, 2009 5:24 pm at 5:24 pm #669178
Yes please do that Willi!! My friend actually just told me she heard about something called that, but we could not find out the number or any other info for that matter. My friend is not chassidish though she has a heimish backround and would love a support group like that!! Please find out the number!December 1, 2009 5:34 pm at 5:34 pm #669179workingMember
I saw somewhere listed a group forming for epilipsy.I think I saw it in the liach hatzibur. I will check when i get home.December 1, 2009 5:47 pm at 5:47 pm #669180
ok clean, as soon as I have it I’ll let you know. (It might be yiddish speaking. do you understand / speak yiddish)
Hatzlacha!December 1, 2009 6:02 pm at 6:02 pm #669181
my friend definitely understands it, not that great at speaking it though. Hopefully there will be some english speaking people she could talk to also. Either way, we won’t know until you find out the number, so we’ll see from there. Thanks!!
working-thanks too!December 1, 2009 11:27 pm at 11:27 pm #669182
The following is the phone number for the support group 845-641-3731. Although 2 Chasidishe woman take care of it they both communicate very well in English, and occasionally when they have guest neurologists as speakers I assume it’s in English.December 1, 2009 11:36 pm at 11:36 pm #669183
Isher are you talking about someich noiflim that I suggested earlier? (cuz I still didn’t find their number as of yet.)
In any case most yiddish speaking adults in NY also speak or at least english so I think “M’vet zich farshtein”
Good Luck.December 2, 2009 12:07 am at 12:07 am #669184plaidMember
Not sure if this is what you’re looking for, but there’s also frumsupport.com which has a section for people suffering from epilepsy. They may have more info about support groups.December 2, 2009 4:21 am at 4:21 am #669185
willi: Yes the support group that I was referring to is Someich Noflim.December 2, 2009 3:00 pm at 3:00 pm #669186
Thank you Isher for the info. Will pass it along to my friend, sounds exactly what she needs. No one else should ever need such a thing….December 3, 2009 3:53 am at 3:53 am #669187HealthParticipant
What do they need a support group for? Are the seizures controlled or not? If they are, then there is no difference between them and anyone else, except they need to take meds and go to a doctor once in awhile. They have a good prognosis if they are controlled.December 3, 2009 5:16 am at 5:16 am #669188
People need support groups for a number of reasons, whether or not the disease is controlled.
Think about it, it could be that the parents find it difficult to convince a child to take medication, or avoid certain activities. And furthermore, some people feel better after sharing their experiences with others who have similar problems. It is quite difficult to live with a chronic disease, especially if the patient is your child.
This is especially a problem in the Hareidi community, which stigmatizes many diseases, especially neurologic and psychiatric disorders. Didn’t you read CQ’s post about the fact that the parents could not tell her parents or in-laws? Support groups can be a great help in educating the community about how to deal with these issues.December 3, 2009 8:52 pm at 8:52 pm #669189
Health: As Starwolf says: People need support groups for a number of reasons, whether or not the disease is controlled.
Although sometimes seizures are controlled with medications certain conditions can cause an epileptic person to have seizures. The hospitalization and finding the right medications during this time can be very hard on parents. Also, a lot of these patients usually need more than one medication in order to control the seizures. The responsibility of the parent / guardian can be very burdensome (Different medications administered at different times of the day.) The “not knowing” when a seizure will occur also adds to the stress and anxiety.
It helps to hear what others are experiencing, get helpful ideas and knowing that you’re not alone makes it so much easier to face your challenge.December 4, 2009 2:59 am at 2:59 am #669190HealthParticipant
As someone who advocates stopping the stigmatization of certain diseases in the frum community, I feel the best approach for CQ is to tell her relatives the truth. If you hide it even from relatives, not only are you not relieving the stigma, you are adding fuel to the fire. The main reason people hide things is because they are embarassed; if you talk openly about it, people will see there is nothing to be embarassed about. This will decrease the stigma greatly and also help mentally and physically ill people get married. It won’t be taboo anymore to marry them. (Unless there is a good chance of it being passed down -which is not always so likely.)December 4, 2009 1:10 pm at 1:10 pm #669193
To Health (laBriut!);
while I agree with you about jthe idea of being open about disease and syndromes on a wholesale level (in principal) I think that as far as retail goes (individual cases) we cannot necessarily apply something in every case. We have to take into account the individual’s own needs, and if this will make family matters significantly worse for them, they should not be expected to just do it for the overall good of educating the community.
And unfortunately, in the hareidi community, neurological/psychiatric disorders do affect the chances of the patient’s ability to marry as they would like, as well as that of their siblings. However, given the community’s resistance to “modern” ideas, it is unlikely that such feelings will disappear soon, and any individual family might well feel that educating the community is not worth hurting their childrens’ chances for a shidduch.
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