Marfanoid Maned Wolf

On MemeGen: http://memegenerator.co/Marfanoid-Maned-Wolf

[marfanoidmanedwolf]

Does the "marfanoid look" only occur in Marfans, or does it also occur in EDS and/or other connective tissue disorders? I know they are not as characterized by it but can it also be a feature of those disorders, or just specifically Marfans?

There are several disorders which can cause a marfanoid appearance, including EDS Type 6 (Kyphoscoliosis Type), Klinefelter’s Syndrome (XXY Chromosomes) and Loey-Dietz Syndrome. So the appearance is certainly not exclusive to one disorder. Strictly speaking of the common EDS types - The body type seems uncommon. Going into an EDS support group you tend to see a lot of women (And far fewer men.) who look fairly average across various shapes and sizes. There isn’t a singular phenotype that strongly suggests having EDS unlike the Marfanoid Habitus with Marfan Syndrome. In fact the idea that all connective tissue disorders produce a Marfanoid Body has been quite harmful to people with EDS because they tend to not have a striking appearance, and as a result it takes longer before doctors begin to suspect the presence of a Connective Tissue Disorder. I had a doctor diagnose me with EDS, but I felt incredibly out of place in the support groups because most of my problems were different from theirs. I have a lot of body-image issues specifically relating to being marfanoid, and some skeletal deformations that I’ve not seen in EDS people. Hopefully in the future we will be able to provide better taxonomy and diagnostic procedures so that everyone can find the answers and help they need. 

[marfanoidmanedwolf]

tip! old navy sells clothes online that have the lengths of the pant legs/sleeves extended ! -fellow marfans kid

This is actually potentially a pretty useful tip, thanks!

[marfanoidmanedwolf]

I’ve decided next time I see my doctor I’m going to be asking for pain meds, really hope I don’t get the whole “Take some Tylenol” speech.

[marfanoidmanedwolf]

Just thought I’d give an update to this post, got the tylenol speech followed quickly by “I don’t want to see a young person on narcotics.”

[kooky-zebra]

My hands are liquid

[marfanoidmanedwolf]

Fascinating to see people with similar hands to yourself. ^.^ I do a lot of these things when I’m bored, as well.

[marfanoidmanedwolf]

Parents and doctors: You can't let this illness rule your life and stop you from doing normal things.

Me: *Tries to do normal things*

Parent and doctors: What are you doing? I think you need to stop doing these things...You don't realize how serious your condition is.

Me: *Implodes*

[kaleighfratkins]

Doctors hate them! Local sick kid has multiple chronic illnesses that require comprehensive care

[marfanoidmanedwolf]

One of the worst things about having an incurable illness is the negative reaction OTHER people have about it if you attempt to actually talk about your feelings. If you admit to suffering, you are seen as “feeling sorry for yourself.” If you acknowledge that you will have it forever, you are seen as depressing or self-defeating. If you don’t talk to anyone about it at all, you risk developing a warped perspective on your own situation and missing out on options to possibly improve your quality of life. I think a part of the negative reaction is the empathetic response giving the idea that if you are suffering, your friends must also feel bad for you. Yet, it only really ends up making you feel even more isolated when simply talking about your own experiences causes people to want to shut you off entirely for being too negative.

[marfanoidmanedwolf]

I’ve decided next time I see my doctor I’m going to be asking for pain meds, really hope I don’t get the whole “Take some Tylenol” speech.

[marfanoidmanedwolf]

A List of Clothing that Doesn’t Fit

Gloves - Fingers always too short.

Long Sleeve Shirts - Sleeves never long enough.

Pants - Luckily ankles aren’t scandalous anymore.

Shoes - If they are long enough, they are too wide.

Skirts & Dresses - Too short. Always.

Anything made for humans: nope, not going to fit.

[marfanoidmanedwolf]

True story: Yesterday I had my left leg pop out of joint by rolling over. Quite a painful experience.

[marfanoidmanedwolf]

Hi there! I just wanted to share an experience that seems like might contribute to the ongoing discussion. I was diagnosed when I was five and later found to have a duo bicuspid aorta. Flash forward to now, I hadn't been to see a doctor for check ups in about a decade due to moving and uninsured(also fear). The doctors I saw last thursd (fucking UCSF, of all places) said that since I don't currently have the physical markers I probably don't have it or I've got something like Ehler's Danlos. (c)

(c) So an hour of this, having an entire experience & lifetime invalidated because I was never genetically tested (since I was diagnosed before the gen test /existed/). I have 2 brother's diagnosed with Marfan's, a parent who died from heart failure who was diagnosed, and 2 gens of grandmothers who died of what looked like aortic dissections/ruptures. These doctors were so insensitive & kept on saying "it'd be great if you didn't test positive" like itd cure the heart defect or chronic pain...

Right? There is so little research done on those of us who skirt the edges of these conditions. When I myself went to see a geneticist, he completely ignored that I have multiple deformed bones, including my ribcage because it didn’t fit the standard picture of the sternum malformations to be expected in Marfans. I’m officially diagnosed with EDS, but I was told by my own doctor that it was a place-holder diagnosis because my insurance wouldn’t cover genetic testing. (Hence why this is a Marfanoid blog, rather than Marfan-only.) As a patient population, we aren’t being really looked at properly. In my case, I don’t have family history, but also NO ONE else in my family has any of the signs of it that I have. I stand out due to my unusual body proportions, my flexibility, even my elongated facial structure. However, I doubt I’m ever going to get actual answers at this point, because most of the specialists I talk to don’t want to help with even the most basic things.

[marfanoidmanedwolf]

Hey i love your blog i just found it. I just want to confirm that i believe many people with marfans who do not fit the 'typical' body type or height proportions remain undiagnosed. I have many symptoms of marfans, my mother has it, and i've been looked up n down by doctors and told i don't look like a 'typical marfanoid'. Hell, i nearly got turned away from a blood test because of their bullshit subluxation eye test (i shook my head vigorously and they were looking lens movement under my eye)

(2~). We only managed to convince the specialist doctor to take my blood through my mum panicking and getting a fax from my optician. She put up with being told she wasnt a typical marfan (tall/thin) for ten years after her optician noted about her subluxated lenses. She nearly died, she was so unwell. Half of people with marfans remain undiagnosed, and i believe the misinformation doctors have that marfanoids are tall and thin isnt great. Awareness is needed and i applaud your blog, i love it!

I find it interesting to look at the different body types in these populations. As someone whose primary symptoms are musculo-skeletal, it’s odd for me to see people diagnosed with the same or similar conditions with none of the same symptoms. When I see people for example, who don’t have the marfanoid habitus, but are manifesting other connective tissue disorder symptoms I don’t have (such as gastro, chiari, migraine, etc.) I always wonder if there are more variations on these disorders than we realize. Because I myself fall under the “Tall, emaciated, long limbs” club, I actually tend to avoid support groups for CT disorders simply because from my experience most of the people there tend to be suffering from totally different symptoms. (Obviously there is nothing wrong with this, It’s just sort of alienating for me.) I hope I’m not derailing your story too badly. I myself have had similar problems because of some of the symptoms I don’t manifest. I agree that there needs to be more awareness, and I’m always very glad to see mail in my inbox to support me in continuing this blog.

[marfanoidmanedwolf]

[marfanoidmanedwolf]

Literally I'm so glad this blog exists thank you ❤️❤️❤️

It has been a long time since this blog was updating, but I happened to remember it existed recently and I’m hoping to start churning out some humour more regularly. It’s certainly something myself and others with marfanoid conditions need more of in their lives.Thank you for the support. <3

[marfanoidmanedwolf]

Due to muscular hypotonia, I  cannot stand straight or even sit up on my own for more than ~30 seconds. It’s a symptom of connective tissue disorders that I don’t think gets enough discussion.

[marfanoidmanedwolf]

Too many times... too many times...

[marfanoidmanedwolf]

(Mod Note: I was the ONLY kid in my class in public school that failed PE.)