Fell in love with girl with Lujan-Fryns Syndrome

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Hi,

I met a girl online about three years ago.

At first, she seemed very closed off from people, but over time she slowly began to open up to me.

I actually learned about Autism mostly by becoming aware of her personal traits and discovered she was Autistic and that I am Autistic as well.

I learned to be kind of straightforward with her, and I told her that I cared about her and I love her.

But she alluded to the fact that something was wrong with her, and I didn't know or think anything was.

I recently came across the wikipedia article for Lujan-Fryns Syndrome accidentally and recognized the characteristics in the article matching her almost completely.

Her Lujan-Fryns Syndrome characteristics are:

* Marfanoid features - she has a long, narrow face and is slender-bodied

* Prominent Forehead

* ocular hypertelorism (only slightly)

* Hyperactivity

* Aggression

* Shyness

* low frustration tolerance

* Autistic traits

She may also have an eating disorder, as she is 5'7 but she usually only weighs 116 Lbs.

I'm not sure if she has maxillary hypoplasia, though.


There are also Lujan-Fryns Syndrome characteristics she doesn't have:

* pectus excavatum

* mental-retardation (she actually has high-intelligence)

* hypotonia

* Heart issues

She has actually worked as a waitress at a diner before - which requires a lot of physical-strength and endurance, as she would have to carry trays and walk around for hours.

She's also highly-intelligent, and other people have commented about it before.

She doesn't appear to have any pectus excavatum as I've seen a picture of her wearing a shirt revealing a good portion of her chest, and it seems very flat and doesn't have any sunken areas at all. It basically seems like a typical chest.

So she seems to have mild Lujan-Fryns Syndrome - I actually have never seen a picture of her whole body before, only her chest area and head.

Her limbs and hands are probably long, I would guess.

Though she isn't very tall, as she is only 5'7.

Also, I apologize if my writing is monotone. I've been working long shifts at my job and I'm really tired.

I'm just writing my observations because I've been trying to learn more about this condition that she likely seems to have.

She seems to push people away a lot (even though she actually likes me)

I did talk to her about Autism once, but she called it a petty condition and felt insulted when I brought it up.

I wonder if she pushes people away due to her having physical-deformities (and if she does, I don't care)

I care about her very much.

Please, share your knowledge and experience of Lujan-Fryns Syndrome with me

Thank you.

Last edited by Dog1 on 18 Apr 2019, 11:18 am, edited 1 time in total.

Hi,

I met a girl online about three years ago.

At first, she seemed very closed off from people, but over time she slowly began to open up to me.

I actually learned about Autism mostly by becoming aware of her personal traits and discovered she was Autistic and that I am Autistic as well.

I learned to be kind of straightforward with her, and I told her that I cared about her and I love her.

But she alluded to the fact that something was wrong with her, and I didn't know or think anything was.

I recently came across the wikipedia article for Lujan-Fryns Syndrome accidentally and recognized the characteristics in the article matching her almost completely.

Her Lujan-Fryns Syndrome characteristics are:

* Marfanoid features - she has a long, narrow face and is slender-bodied

* Prominent Forehead

* ocular hypertelorism (only slightly)

* Hyperactivity

* Aggression

* Shyness

* low frustration tolerance

* Autistic traits

She may also have an eating disorder, as she is 5'7 but she usually only weighs 116 Lbs.

I'm not sure if she has maxillary hypoplasia, though.


There are also Lujan-Fryns Syndrome characteristics she doesn't have:

* pectus excavatum

* mental-retardation (she actually has high-intelligence)

* hypotonia

* Heart issues

She has actually worked as a waitress at a diner before - which requires a lot of physical-strength and endurance, as she would have to carry trays and walk around for hours.

She's also highly-intelligent, and other people have commented about it before.

She doesn't appear to have any pectus excavatum as I've seen a picture of her bearing a shirt revealing a good portion of her chest, and it seems very flat and doesn't have any sunken areas at all. It basically seems like a typical chest.

So she seems to have mild Lujan-Fryns Syndrome - I actually have never seen a picture of her whole body before, only her chest area and head.

Her limbs and hands are probably long, I would guess.

Though she isn't very tall, as she is only 5'7.

Also, I apologize if my writing is monotone. I've been working long shifts at my job and I'm really tired.

I'm just writing my observations because I've been trying to learn more about this condition that she likely seems to have.

She seems to push people away a lot (even though she actually likes me)

I did talk to her about Autism once, but she called it a petty condition and felt insulted when I brought it up.

I wonder if she pushes people away due to her having physical-deformities (and if she does, I don't care)

I care about her very much.

Please, share your knowledge and experience of Lujan-Fryns Syndrome with me

Thank you.

I've never heard of this disorder.

But congratulations on finding this girl.

116 lbs. at 5 foot 7 is actually not uncommon for women. It's not excessively thin (unless she appears that way to you).

What I'm concerned about is the "pushing away." I've had people "push away," then "push back in." Trust me, this sort of cycle isn't cool. I would stop the "pushing away" as soon as possible.

First time I ever heard of it.

Though there is a young woman who runs the local aspie/autistic adult support group who kinda looks a little like a person with the condition (yours and the Wiki description and picture). I find her quite attractive actually. Sorta doubt that this lady actually has the condition but she does have a long narrow face and lanky build. The lady I know is very high functioning, and a brainiac, but is also comes off as quite eccentric. I dunno. Couldnt tell you whether she has it or not. Just makes me wonder.

Source: This Article from the National Institute of Health's U.S. National Library of Medicine.

Lujan syndrome is a condition characterized by intellectual disability, behavioral problems, and certain physical features. It occurs almost exclusively in males.

The intellectual disability associated with Lujan syndrome is usually mild to moderate. Behavioral problems can include hyperactivity, aggressiveness, extreme shyness, and excessive attention-seeking. Some affected individuals have features of autism or related developmental disorders affecting communication and social interaction. A few have been diagnosed with psychiatric problems such as delusions and hallucinations.

Characteristic physical features of Lujan syndrome include a tall, thin body and an unusually large head (macrocephaly). Affected individuals also have a long, thin face with distinctive facial features such as a prominent top of the nose (high nasal root); a short space between the nose and the upper lip (philtrum); a narrow roof of the mouth (palate); crowded teeth; and a small chin (micrognathia). Almost all people with this condition have weak muscle tone (hypotonia).

Additional signs and symptoms of Lujan syndrome can include abnormal speech, heart defects, and abnormalities of the genitourinary system. Many affected individuals have long fingers and toes with an unusually large range of joint movement (hyperextensibility). Seizures and abnormalities of the tissue that connects the left and right halves of the brain (corpus callosum) have also been reported in people with this condition.

Since this syndrome affects mostly males, I have to wonder where the OP acquired his "diagnostic skills". Simply reading an online article (i.e., Wikipedia) and making a few assumptions is not an effective means of making a valid diagnosis. So, unless the OP is an appropriately-trained and licensed medical practitioner, AND he has personally examined his "patient" and run the necessary medical tests, I would be entirely skeptical of this or any other "diagnosis" he made have made.

If she hasn't actually told you she has Lujan-Fryns Syndrome, I would never assume that she has it based on a Wikipedia articule.

There are other genetic disorders where people have similar symptoms.

Don't present your "diagnosis" of Lujan-Fryns to your girlfriend. You are most likely wrong, and it is intrusive and insulting to find something online that you think describes her perfectly.

Of course, you are free to disagree.

Hi,

Thank you for your response.

I have not made any previous claims of being a medical professional and I made a deduction based on the similar characteristics in the article in relation to her characteristics.

If you are a medical professional then I would greatly appreciate your professional opinion about what condition her symptoms are indicative of.

Thank you again.

If you could list a few, I would be really appreciative and thank you.

I actually agree.

I wouldn't bring this to her - that is why I wanted to seek the knowledge of some of my fellow Aspies here.

I welcome any knowledge or help on the subject and thank you.

That sounds a lot like my girl. She doesn't run a support group, though.

I'm not really sure why she pushes others away.

I guess it's from the Autism, but she seems secretive about her overall appearance.

I've only ever seen photos of her head and chest thus far, which is why I wonder if there is physical-deformity.

I guess I'm trying to understand whatever her situation is, but as BeaArthur said, I can't really ask her about it.

So I'm hoping to glean knowledge from my fellow Aspies.

And thank you again for your support, I really appreciate it.

I am not a medical professional, nor do I represent one. It makes no sense for me (or any other non-medical professional) to make a diagnosis. This is why I question your ersatz "diagnosis".

You would be better off to not speculate as to her medical condition, and to leave the diagnosing to her doctor.

I think there is a misunderstanding as to the context of my being here..

I'm actually somewhat familiar with this place, and I've read through your posts and you seem like a kind and intelligent person.

You've kind of nitpicked through my post and critiqued my observations on her traits, which were meant only as a way to relay information for people here on WrongPlanet to analyze and then hopefully impart their knowledge of those symptoms so that I can get an idea of what her situation is.

I really need your help with what her symptoms mean - and not how I wrote them down, if you get what I mean.

If some of my fellow Aspies have some ideas as to which condition her symptoms reflect, it would be great if I could get feedback on that.

Also, I'm not even sure if she has a doctor - she seemed to indicate that her condition might not be diagnosed.

That's why I'm here to collect information with Aspies who might have experience with Marfan Syndrome, which she seems to have.

Also, the list of traits I read on the Lujan-Fryns wiki article does match her symptoms, so I'm wondering if she does indeed have that, or perhaps a mix of Marfan Syndrome and Autism.

I really would value your experience on this, because you've probably known of plenty of people who have these conditions.

From the positive descriptors you've listed it sounds like this young woman is tall and slim, with common personality traits (sometimes shy, sometimes more aggressive). You already mentioned that she might be autistic, which would explain her low frustration threshold. Please don't approach her with a medical diagnosis which is based even partially upon "But, you have a prominent forehead!", "I'm not sure if you are physically deformed", or "You're really slim!" That would be extremely hurtful and make her feel very judged.

Nothing else that you've said seems to match the condition you describe.

Please bear in mind that it's impossible to determine whether someone has an eating disorder by looking at their weight. We know not to judge or label people who are overweight, and the same goes for people who are slim. I know you didn't label her with an eating disorder, but be cautious with that thought.

You ask about her "symptoms". I don't see any symptoms here of anything. She's a young woman with a personality no different than most people, especially if they're on the spectrum.

Have you considered that you may have MSBP?