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  #1  
September 15th, 2010, 07:26 PM
fluffycheeks's Avatar Mega Super Mommy
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Hi, I noticed in your siggie that it says you have PCOS and XPID. What is XPID exactly? I have PCOS too, so if the two are related, I want to know everything about it! If you don't mind sharing, that is. Thanks!

Last edited by fluffycheeks; September 15th, 2010 at 07:30 PM.
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  #3  
September 15th, 2010, 07:42 PM
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The only thing I could find on google about xpid, was the article that she wrote herself. I have never heard of it.

XPID: An Autoimmune Disorder - Associated Content - associatedcontent.com
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  #4  
September 15th, 2010, 07:43 PM
fluffycheeks's Avatar Mega Super Mommy
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Hmmmm.... I don't know. I just saw in her siggie that she is trying to get pregnant in spite of having PCOS and XPID. Since I have a bit of trouble getting pregnant to, I like hearing about anything related to PCOS. I would just like to hear more about it.
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  #5  
September 15th, 2010, 07:44 PM
foxfire_ga79
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Quote:
Originally Posted by RTMOM View Post
The only thing I could find on google about xpid, was the article that she wrote herself. I have never heard of it.

XPID: An Autoimmune Disorder - Associated Content - associatedcontent.com

I found that too so I googled the words that XPID stands for and got tons of results for IPEX. I've never heard of either, they sound like pure hell.

But I bet you they're both the same thing and she just got her letters mixed up. That so easy to do with all those medical abbreviations.
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  #7  
September 15th, 2010, 07:49 PM
Hey... Where's Perry?'s Avatar Darnit face
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I've never heard a disease have an abbreviation for "diarrhea." I am very interested in learning more info, as well. I love learning new things, can't wait!!
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  #8  
September 15th, 2010, 07:54 PM
Lash's Avatar Platinum Supermommy
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The only stuff I find is all written by Amy

This source calls it a gentic disease, and I truly thought it meant something I had never heard of (no snark) but I think Amy you meant genetic?

XPID: A Rare Gentic Disease - Indianapolis Mental Health | Examiner.com

So I tracked her references. Wikipedia, which is listed as a source, says this

Quote:
# The most serious but rarest form is the X-linked polyendocrinopathy, immunodeficiency and diarrhea-syndrome, also called XLAAD (X-linked autoimmunity and allergic dysregulation) or IPEX (immune dysfunction, polyendocrinopathy, and enteropathy, X-linked). This is due to mutation of the FOXP3 gene on the X chromosome.[2] Most patients develop diabetes and diarrhea as neonates and many die due to autoimmune activity against many organs. Boys are affected, while girls are carriers and might suffer mild disease.
But no existence of XPID. I'm guessing XPID means X-linked PID.

The article Melinda listed says this though

Quote:
the defect of which causes X-linked polyendocrinopathy and enteropathy (IPEX), is located nearby, between bands Xp11.23 and Xq13.3. In these disorders, only males are affected and females are asymptomatic carriers.
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  #10  
September 15th, 2010, 08:06 PM
Lash's Avatar Platinum Supermommy
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If you search XPID, you'll find little. If you search X-linked PID, or IPEX you'll find more.
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  #11  
September 15th, 2010, 08:06 PM
fluffycheeks's Avatar Mega Super Mommy
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I'm sure it's legit - she has it in her siggie! I just want to learn more about it, and she can probably explain better than a website, kwim?
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  #13  
September 15th, 2010, 08:12 PM
Lash's Avatar Platinum Supermommy
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However the thing I keep running into, that I think George is asking about, is that everything says females are unaffected

Amy did you get treatment for this as a child?

Quote:
In essence, IPEX is the result of a severe dysregulation of the immune system that can also lead to thyroiditis, hypothyroidism, autoimmune hemolytic anemia, recurrent infections, and membranous nephropathy. Without treatment, children usually die in the first 2 years of life due to sepsis or failure to thrive.

Although the inheritance pattern of IPEX is X-linked recessive in case of mutations in FOXP3 (with no reported female patients, and asymptomatic female carriers of the gene mutation), the disease might be genetically more heterogeneous than initially presumed as a few patients with IPEX were found not to carry mutations in FOXP3
IPEX as a Result of Mutations in FOXP3

Quote:
Only males have been noted to be affected in this X-linked recessive process. Obligate carrier females have all been healthy in cases reviewed in the literature. The female IPEX syndrome carriers do not appear to be subject to disease manifestation related to a skewed pattern of lyonization or inactivation of the unaffected X-chromosome.3
Quote:
Immune dysfunction, polyendocrinopathy, enteropathy, X-linked (IPEX) syndrome should be considered in young male patients with intractable diarrhea with accompanying villous atrophy or failure to thrive. Further support for the diagnosis is gained by the presence of the other 2 elements of the predominant triad: eczematous or psoriasiform dermatitis and early onset, insulin-dependent diabetes.4,7

It is an X-linked recessive disease process, and a male child of a female carrier has a 50% chance of being affected. A female child has a 50% probability of being an asymptomatic carrier.
Immunodysregulation Polyendocrinopathy Enteropathy X-Linked Syndrome (IPEX): eMedicine Pediatrics: General Medicine

Quote:
IPEX syndrome: A rare condition involving autoimmune problems which can variably manifest as enteropathy (diarrhea), hemolytic anemia, and endocrine gland diseases such as diabetes mellitus and thyroid disease. Resistance to viral infections is poor. The condition is life-threatening, especially during infancy and early childhood. As the condition is inherited in a X-linked manner, males tend to suffer severe symptoms whereas females suffer few if any symptoms as they are a carrier of the condition.
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Last edited by Lash; September 15th, 2010 at 08:16 PM.
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  #14  
September 15th, 2010, 08:22 PM
Lash's Avatar Platinum Supermommy
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This is how rare it is

Quote:
Nine month old Toby Ellis was born with a rare genetic condition which, only fourteen children in the world have been diagnosed with. Toby has spent much of his young life in hospital. Ipex Syndrome means that Toby is unable to produce the white blood cells that his body needs to turn off the immune system after fighting an infection.

To keep Toby safe from infection, he is kept in a bubble where the air around him is constantly filtered. Lisa, his mother, is not allowed to approach him without following a strict scrub-up procedure. It is a procedure that will help keep Toby alive. She may not kiss or cuddle him for fear of passing, what would be a deadly, infection.

Catherine is now nearly 20 weeks pregnant. The 14 babies around the world who have been diagnosed with Ipex Syndrome have all been boys. Catherine and her boyfriend, Ben, must now decide if they want to find out the sex of their baby. Following a routine ultrasound scan it is revealed that she is carrying a baby boy. This does nothing to relieve her concerns.
Toby Ellis, the baby with Ipex Syndrome

Nutrition support for infants and ... - Google Books





Quote:
Many PID disorders including XLP are inherited in an X-linked fashion. Male patients will manifest the disorder, while females are asymptomatic carriers of the mutation. Figure 1 shows the family tree of this XLP kindred. The male proband (V:1, described above) carries the disease-causing mutation, which was inherited from his mother (IV:1) [17]. Critically, analysis of the proband's sister (V:2) and two maternal aunts (IV:4, IV:5) showed they had not inherited the mutation. Therefore, their children are not at risk of inheriting the disorder. In other disorders, affected members may have phenotypic variation within the same kindred. Genetic testing plays a crucial role in family studies [22].
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  #15  
September 15th, 2010, 08:24 PM
Poncho06's Avatar Mega Super Mommy
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  #17  
September 15th, 2010, 08:31 PM
Lash's Avatar Platinum Supermommy
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By nature of the definition, no
Quote:
X-linked: inherited by boys from the mothers in X-chromosome.
However, you could always be a carrier. If a mother is a potential carrier, genetic screening is drastically important before conception, as this disease causes a myriad of horrific symptoms, and requires isolation, bone marrow transplants and can develop lymphoma and other cancers. PCOS does often mimic the symptoms as well
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  #18  
September 15th, 2010, 08:32 PM
foxfire_ga79
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Originally Posted by Poncho06 View Post

Yea, me too.
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  #19  
September 15th, 2010, 08:32 PM
Lash's Avatar Platinum Supermommy
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Here is what an X-LINKED disorder is

Quote:
There are several X-linked (or sex-linked) recessive genetic disorders, (hemophilia, muscular dystrophy) which are inherited through a genetic defect on an X chromosome. A female has 2 X chromosomes, one she inherited from her mother and one she got from her father. A male has an X chromosome from his mother and a Y chromosome from his father. If a woman has the defect on one of her X chromosomes, and the father's X chromosome is normal, there is a 25% chance for each pregnancy to produce: an unaffected girl; a girl who carries the defect; an unaffected boy; or a boy with the disorder.
You can always count on this board for research!

I think it looks like Amy might have some symptoms of some disorder that clearly causes her discomfort and pain, but it clearly can't be XPID, as this is a male only disorder, and IPEX only causes asymptomatic females. Amy, is there possibly another word for the autoimmune disorder you might have?
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  #20  
September 15th, 2010, 08:49 PM
fluffycheeks's Avatar Mega Super Mommy
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Huh? That doesn't make any sense. I'm sure godzgril4evr will clear things up for us.
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