FAQ - Hyper-IgM Immunodeficiency Syndrome, Type 1
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any females out there with Type 1 Diabetes and Turners Syndrome?


just wondering if there's anyone else like me :)
:( guess not...
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How does immunodeficiency with hyper-IgM affect the life of the person afflicted?both physical mental symptoms


oops i meant physical AND mental symptoms
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X-linked immunodeficiency with hyper-IgM is a severe disease. Most children are diagnosed before they are 4 year old. Only about 1 out of 5 persons with this disease survives to age 25.
Complications, that can be deadly, include pneumonia (lung infection), encephalitis (brain infection), liver and intestinal problems, various cancers and other infections. All of these problems can effect the body and the mind of individual patients in very different ways, depending on the severity of the complications, the success of treatments, and the support they receive from family/ friends/ healthcare team.  (+ info)

Diabetic Type 1: I wanted to know about dead-in-bed syndrome?


IM VERY WORRIED AND NOW IM SCARED TO TAKE INSULIN I DONO WUT TO DO PLEASE HELP ;(:(:(:(
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'Dead in bed' syndrome refers to unexplained deaths in young people with Type 1 diabetes. Research shows little definitive evidence as to the cause of this very rare phenomenon. There is a small amount of published evidence looking at the condition. One possible theory has been a link to hypoglycaemia (hypo) during the night. It is suggested that this may compound an abnormal heart rhythm, which can cause death.

For the vast majority of individuals who use insulin, diabetes can be safely and efficiently controlled. Some people, however do have difficulty managing their diabetes, including having difficulty recognising signs of oncoming hypos. With relation to 'dead in bed' syndrome and nocturnal hypoglycaemia, we would advise individuals who experience hypoglycaemia during the night to speak with their diabetes care team about how this can be resolved. In addition, blood glucose levels should be checked before going to bed and a snack eaten to help ensure levels do not fall through the night.

Some reports have sought to link differences between human and animal insulins to 'dead in bed' syndrome. While some people are unable to effectively control their diabetes with particular types of insulin, there is no evidence to support a link between the type of insulin used and 'dead in bed' syndrome. There has been no increase in the number of deaths attributed to this cause since the introduction of human insulin.

Of course if you are Type 1 you have to take Insulin. If you do have Hypoglycemic episodes then make sure you have a snack before bedtime.

Each of the following counts as one starch:


One small apple, orange, peach, pear, nectarine, or tangerine
Eight animal crackers
Four medium fresh apricots or seven dried halves
1/2 of a banana rolled with 2-tablespoons Grape Nuts cereal
1 cup cubed cantaloupe
Twelve Bing cherries
Two chocolate mousse bars (Weight Watchers)
1/2 cup chow mein noodles
Two sugar-free fudgesicles
Three gingersnaps
36 Goldfish (adds 1 fat serving)
Three graham crackers (2 1/2-inch square)
1/2 low-fat granola bar
15 grapes
½ cup fruit juice
Five slices melba toast
1 cup skim milk
Three peanut butter sandwich crackers (adds 1 fat serving)
Two small plums
24 oyster crackers
3 cups popcorn (popped by hot air, or low-fat microwave)
1 slice of angel food cake
1 sugar-free pudding snack cup
Three dried pitted prunes
15 fat-free potato or tortilla chips
3/4 ounce pretzels
2 tablespoons raisins
Two rice cakes (4" diameter)
1 regular Jell-o snack cup
Seven Ritz crackers (adds 1 fat serving)
Six saltine crackers
½ cup canned fruit
15 Teddy Grahams (adds 1 fat serving)
Five reduced-fat Triscuits
Six Vanilla Wafers (adds 1 fat serving)
Six Waverly Wafers (adds 1 fat serving)
12 Original Wheat Thins (adds 1 fat serving)
13 Reduced-fat Wheat Thins (adds 1/2 fat serving)
1 cup nonfat fruit-flavored yogurt (sweetened with sugar substitute)
1/2 cup of sherbet or I Can't Believe It's Yogurt or TCBY frozen yogurt

Take care , but lighten up. If you do what you have to do you won't die of this. Take care.  (+ info)

Where can I find info about Mayer Rocker Stanski Kuster Hauster Syndrome - Type 1?


Spelling may be incorrect, but "Mayer" is right. I am missing half my reproductive organs, & possibly a kidney,
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Mayer-Rokitansky-Küster Syndrome. Also referred to as:

Küster’s syndrome
Mayer-Rokitansky syndrome
Mayer-von Rokitansky-Küster malformation complex
Mayer-Rokitansky-Küster syndrome
von Rokitansky-Küster-Hauser syndrome
Rokitansky-Hauser syndrome
Rokitansky-Küster syndrome

Characterized by congenital absence of vagina, primary amenorrhoea, rudimentary cornua uteri and morphologically normal ovaries and Fallopian tubes situated on the pelvic sidewall. Normal ovulation; normal breast development; normal body and hair. The woman is amenorrhoeic and infertile. Frequently associated with urinary tract anomalies, skeletal abnormalities, congenital heart conditions, and inguinal hernia. Due to a form of dysplasia of the Müllerian ducts. Incidence statistics differ from 1: 4000 (at birth) to 1: 20,000 at female hospital admissions. Recognized usually at time of expected menarche. Usually sporadic. Familial form consistent with autosomal dominant trait.

There are some good scholarly articles here:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=976714&dopt=Abstract

http://www.medscape.com/viewarticle/410500_print

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1368996&rendertype=abstract

http://www.greenjournal.org/cgi/content/abstract/99/5/947

http://www.ishid.org/ishid/v2/abs/09.pdf

Try the Magic Foundation at http://www.magicfoundation.org/www/docs/107.290 for additional info and support. Good luck and hope this helps a little.  (+ info)

want to see pictures of newborn with sighs and symptoms of pena-shokeir syndrome type 1?


No.. I don't... but since I looked at the link... trust me, I have seen worse... much much worse

Since you seem intrested in those things... you can see what I mean here : http://www.thefetus.net/listing.php?id=2 just click a case and then click "See Answer" in the blue writing towards the bottom..... DO NOT LOOK IF YOU ARE SENSITIVE... VERY DISTURBING FETAL ABNORMALITIES! (some dont contain the actual pictures of the born child... some is just ultrasound pictures)

I found this site while I was looking for information about pregnancy weeks by weeks (I am 8 months pregnant right now)  (+ info)

I am 27 and have a mental illness and diabetes ( type 1)do i qualify for social security benefits?


I am 27 and have a mental illness and diabetes ( type 1)do i qualify for social security benefits. It impedes me from working even though I finished college my symptoms keep progressing with the hyper anxiety. I dont have medical insurance and keep seeing these people with free medicine and such how do I get the same help in Los Angeles County???
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I'm going to give you my standard answer to this question that I wrote up:

You should contact your county social services offices and see what help may be available. I know in my area, a guy needed SSI, and a local church plus general welfare helped pay his bills until the social workers could get his SSI paperwork thru. He has schizophrenia or something, I'm not sure (don't like him, so I don't ask.) The mental health problem has to be very severe, or if you have another condition like low vision or hearing loss, the two disabilities together may be very severe. You have to be unable to work at ANY job where you could earn about $800 a month or more. So if you can flip burgers, you don't qualify. Not being able to work consistently is where many disabilities fit in. It's not realistic to hold a job if you will miss work 50 days a year, obviously. Some states have a program you pay into while you work that will pay for short term disability (that's what it's called, there is short term and long term disability). I know California had that, I used that program. I am pretty sure that Massachusetts does too. You can look at pay stubs and see if there is some state plan you have been paying into. Your employer may have been offering short term and long term disability. Long term disability covers mental illnesses only 2 years, usually (discrimination) but that will get you over to SSI/SSA. In CA and Arkansas, the more genetically based mental illnesses may be covered the same as any other illness tho.

Get the book "Social Security Disability" from Nolo Press, at nolo.com, or see if you can get it at your library (maybe even through an interlibrary loan?) It will give you a lot of background on how to apply, what criteria are used, and how to fill out the forms.

You have to be profoundly disabled to get disability, and if you are relatively young and educated, it will be harder. But if you really can't hold down a job, and you can document that, you should get it eventually. You will almost certainly be rejected the first time, and the process takes awhile, so somehow you have to manage your finances in the meantime.

Keep in mind that once you go on disability, you will never get off of it, no one does. You will be in poverty the rest of your life unless you marry out of it or a miracle cures you. The ways the rules are make you dependent on the system, so keep that in mind when you are deciding if you want to do this. A lot of people have no choice, because they can't work at all, or they can't keep a job with insurance to get their pills. but it's still humiliating in America to have no job-people always ask when you are being introduced,"Oh hello, what do YOU do for a living?" which ends up being a very nosy question without meaning to. If you can get supportive help from social services (in my state, they will pay for support groups and a social worker to visit and help with paperwork) or tweak your meds some more, or from a local consumer group (google the words consumer, mental, and your state. Consumer=person getting mental health services) then maybe you won't have to go on disability.

I'm on SSA myself, and need the Medicare, so I'm not being judgmental, I just want you to know what you're getting into. For me, there was no other way. I know a lot of people in the same boat. **Get the book I recommended, it will give you all the legal and inside information to see if you qualify.**

All the best to you! I hope you feel better soon!  (+ info)

I am a type 1 diabetic, have an AVM, Giaume-Barre Syndrome, had a stroke and I need an easy weight loss plan.


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Wow! So sorry to hear of all your medical problems. To start, you should simply begin eating healthily. Take a walk around the block. Nothing too strenuous. Just start moving and get started. Because of all the severe medical issues that you have, you might want to consult your doctor(s) before starting anything at all.  (+ info)

What is the type of mutation responsible for Down Syndrome and what for Turner syndrome?


What is the type of mutation responsible for Down Syndrome and what for Turner syndrome?
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Neither of these conditions is caused by a mutation - a mutation is a change in the base pair sequence of a gene. Down Syndrome is caused by an extra chromosome and Turner Syndrome is caused by a missing or damaged X chromosome.  (+ info)

Whats the difference between type 1 diabetes and type 2?


Hi everyone.
My boss just found out her 16 year old daughter has type 1 diabetes. We were all very sad to hear the news. Apparently she will be taking medication everyday for the rest of her life and she has a strict diet to follow. What's the difference between type 1 and type 2? Also, do people with diabetes have a tendency to be thin and lose a lot of weight because of their diet? Apparently before she was diagnosed, she lost 10 pounds within a month.

Thanks!
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Type one is usually diagnosed early in life, from birth to around the age of 30. There are many theories on why and what happens to the pancreas in type 1. It is thought to be a viruse that attacks it at some point. There are more cases of type 1 in states that have cold weather. These people are always insulin dependent and must inject insulin sometimes up to 6 times a day. The pancreas does not make any (or very little) insulin. In type 2, it is usually diagnosed after the age of 35, but can develop earlier. With this type there are 2 things that can happen. The pancreas can be making lots of insulin but the body is not using it correctly (this is insulin resistance) or the pancreas is not making enough insulin. People with type 2 usually have to take some type or oral meds, but some take insulin, and some take both. There are some type 2's that can control their disease with diet and exercise for many years. Both types of diabetes can be genetic. Both types are caused by malfunctions of the pancreas and are not caused by the wrong diet, or being overweight. Both types of diabetics need to get daily exercise and watch their diets.  (+ info)

What is the percentage that a type 1 diabetic father will pass it on to his children, son or daughter?


I am type 1 diabetic and Brett Michaels stated that if a father has type 1 diabetes, that there is a 50% chance that his children would obtain diabetes. Type 1 or type 2, what are the chances.
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