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amother




Peach


Post  Sun, Aug 13 2017, 11:30 pm
Not sure how many of you have been following the recent posts about different genetic disorders that have been going on. But, my child was recently diagnosed with a genetic disorder. I have yet to find a frum support group or organization that guides those struggling with something like this. Does anyone know of something out there like this?
For all those unfamiliar to this world of genetics, a genetic disorder does not mean it is hereditary. It does not mean other children will receive it in the family and it may not even mean the actual child will pass it on to his future children. It may or may not depending on the disorder.
Down Syndrome, for example, is also a genetic "printing mistake" which we all know is not hereditary and does not run in families.
So there are many people out there dealing with genetic things that you may or may not know of. They keep it silent due to the misunderstandings surrounding it and navigate the confusing world alone.
Any thoughts from those afflicted?
Anything out there or do I start my own?
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siyata dishmaya









  


Post  Sun, Aug 13 2017, 11:30 pm
wo. ill PM you
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siyata dishmaya









  


Post  Sun, Aug 13 2017, 11:37 pm
Anyone know of something,,, ive been asking the same.
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seeker









  


Post  Mon, Aug 14 2017, 12:47 am
Forgive me for my ignorance, but doesn't Chai Lifeline have a support network for this? I know Camp Simcha Special caters to many children with genetic illnesses, including very rare ones, and they have a multitude of other support programs and services for the whole family. I'm sure that at the very least they could point you in a helpful direction...?
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yogabird









  


Post  Mon, Aug 14 2017, 12:51 am
At the end of the day, how is a genetic illness different from any other serious chronic/congenital illness, especially if you're not talking hereditary illnesses?

Not being callous, just curious.
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amother




Ruby


Post  Mon, Aug 14 2017, 2:09 am
amother wrote:

Down Syndrome, for example, is also a genetic "printing mistake" which we all know is not hereditary and does not run in families.

I know this is completely not the point of your post but this statement is not quite accurate. Down Syndrome is usually not inherited but in some families it is.
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amother




Peach


Post  Mon, Aug 14 2017, 1:55 pm
Firstly, Chai Lifeline deals with people that are chronically ill or are going through a major illness. Many with genetic disorders are not. The patient's life may be affected by testing or some limitations, but lead a normal and productive life and are not considered to be sick at all. As far as I know of, Chai Lifeline does not deal with that. If I am mistaken, please let me know.
Secondly, I would like to know where you got the information that DS is hereditary. I have never seen it run in families.
And lastly, I run my pitch again. Anyone interested in joining?
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siyata dishmaya









  


Post  Mon, Aug 14 2017, 2:12 pm
Most cases of Down syndrome are not inherited. When the condition is caused by trisomy 21, the chromosomal abnormality occurs as a random event during the formation of reproductive cells in a parent.
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amother




Pearl


Post  Mon, Aug 14 2017, 2:12 pm
Interested!
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siyata dishmaya









  


Post  Mon, Aug 14 2017, 2:19 pm
Any way I can PM you Pearl?
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amother




Peach


Post  Mon, Aug 14 2017, 2:20 pm
I see I have 2 people up for this. Siyata dishmaya and Pearl. Can I PM you both?
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siyata dishmaya









  


Post  Mon, Aug 14 2017, 2:23 pm
please do. Pearl, can you please PM me?
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amother




Floralwhite


Post  Mon, Aug 14 2017, 2:41 pm
Have you contacted Dor Yesharim to see if they have any network? They were very helpful when we found out that we're carriers of a rare disorder. My kids are b"H not affected but we need to do PGD for future pregnancies iy"H.
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amother




Copper


Post  Mon, Aug 14 2017, 3:27 pm
If you want a general support group (e.g., not specifically frum), I recommend looking on RareConnect (https://www.rareconnect.org/en/communities). If you're looking for a patient organization, NORD has links to many (https://rarediseases.org/for-patients-and-families/connect-others/find-patient-organization/). I find that these are super helpful even though they aren't frum. The general community knows so much.

I have a genetic disorder and we are in the process of getting my child diagnosed as well. I also have an M.Sc. in Human Genetics and work in medical research. I'm happy to answer questions on being a patient myself, being a parent of a kid being diagnosed, and some medical things as a scientist in the field (though please keep in mind I am not a doctor and am not qualified to dispense any sort of medical opinion). Since there are people on this site who can probably identify me by that alone, I don't feel comfortable posting under my screen name, and I also like to keep a low profile about these things so I'm not too bombarded.

In my personal opinion, having a rare genetic disease, having groups of people like you to consult/commiserate with is great. But, because each disease is different, having a frum group seemed less appealing to me, because the population is so small that finding someone else with the same diagnosis as me is slim, and so practically I am not sure how much help it would be. That's just my opinion, and I don't want it to discourage you from starting a group if you feel it's helpful. I just don't think it would fill the same niche as many of the only communities/forums and patient organizations for each disease on it's own. I don't feel necessarily that a support community from the frum world could offer something that I couldn't get from an support community specifically for my condition. But if it could fill a different niche, and people are interested, go for it!

I also remember hearing about a Jewish organization which partners up people with rare (genetic?) disorders, but I have not been able to find the name of it. Someone on this site told me about it. I hope I can find it sometime, I was very intrigued by it but never contacted them or anything and unfortunately don't remember the details.
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amother




Burgundy


Post  Mon, Aug 14 2017, 9:53 pm
Copper amother, I was following this and other threads here but didn't post before. My child has some developmental delays and a few years ago was given microarray testing that diagnosed a genetic disorder (microduplication). I've found a site for parents of children with microduplications on the same general area as my child's, but most of the children have more severe delays than my child does. Probably that's because my child's microduplication is smaller than some. Also, most parents don't get their children tested and seek out a support group unless they have more significant delays.

So I am lucky in that my child can be mainstreamed and just needs extra help, unlike some of the other parents whose children depend on feeding tubes and may struggle to learn everyday activities. That said, though, my child does need a lot of therapies in school and requires some extra medical support, and I could benefit from some advice and support in navigating this. I feel like I can't find that support on that site, because my child's situation is different. Our insurance company offers case managers for certain conditions, but when I called and asked for one I was told that I didn't qualify.

I suspect my child's disorder is de novo but at this point it isn't relevant. My child's father is no longer involved in our lives and he is not available for testing. I'm not having any more children, so there is no reason for me to be tested either.

I think the organization you are thinking of is called beineinu. I did seek them out around the time my child was diagnosed but could not find a match, and they do not appear to be active now.
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amother




Ruby


Post  Mon, Aug 14 2017, 9:54 pm
amother wrote:

Secondly, I would like to know where you got the information that DS is hereditary. I have never seen it run in families.

Here's an explanation of how Down Syndrome can be due to an inherited chromosome condition. Again, this is not relevant to the majority of people with Down Syndrome.
http://genetics.thetech.org/as.....n-syndrome
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amother




Gold


Post  Mon, Aug 14 2017, 10:12 pm
Chai Lifeline might be able to connect you to other Moms. I know that they have connected children and/or parents (if both parents agree) who are facing similar diagnoses/challenges.
Each branch works slightly differently as the population is somewhat different, with different needs or desires (how frum or affiliated they are, not every client is frum) and if their client base is spread over many states they won't be doing the same get together activities as if they only serve people in NY.
Call, it doesn't hurt to ask.
Where (generally) do you live?
If the diagnosis means hospital stays, procedures, surgery etc they might be able to help. They don't typically serve if a client "just" has Downs Syndrome, autism etc unless there is another medical issue (as if one diagnosis isn't enough!)
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amother




Peach


Post  Mon, Aug 14 2017, 11:39 pm
To floral white:
yes, I have contacted dor yesharim. they told me to go for the testing etc and they dont know of anyone with my disorder. because it isn't tragic illness, thats all the attention I got.

To the mother who has a masters in human genetics:
Maybe you can help by being the medical knowledge behind this group?
I am ready to post my phone number if this is something you would discuss.

To the mother that posted her child has challenges but is normal:
Don't you feel like you can use support?!? Imagine getting a packet when you first found out about what was going on... imagine being able to speak to people that understand you etc. WE MUST GET THIS TO HAPPEN!

and lastly, to the mother that mentioned Chai Lifeline:
trying... so far no success.


I was informed by Siyata Dishmaya, that you can PM her if you are interested in joining.
This will take time to get off the ground in the right way, but we can make it happen!
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yogabird









  


Post  Mon, Aug 14 2017, 11:45 pm
Peach amother, you can try to see if the disorder you are dealing with has a main website. Very often those websites are a first destination for parents when a diagnosis is first thrown out and they are full of great info -- including handbooks just like you mentioned.
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siyata dishmaya









  


Post  Mon, Aug 14 2017, 11:51 pm
I do understand there are many support groups out there for the non jewish world that may be helpful to us all. That would be a part of this new organization. Connecting moms to support groups (in the non jewish world) that works for them. and besides for that, there are certain things we can all relate to. (like the endless appointments maybe??)
It would be the idea, that when a frum mom hears this diagnosis, she is not alone. No matter how big or small of a deal it is, it affects her life and she is entitled to support. A phone number to call with medical questions or support group referrals, a listening ear, genetic advice, reading material and so much more. Are we on?
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