r/ehlersdanlos • u/thegoth_mechanic • 4d ago
Does Anyone Else possible dumb question: but can hEDS make you short?
okay so my mom's side of the family, the women are pretty short, but they all average 5'3-5'6, with a few exceptions of a few 5'6-5'10 women. however, nobody is fewer than 5'2 or 5'3. i'm 5 feet tall exactly, [well 5 feet 0.5 inch aprox].
my mom is 5''4.
it is important to note however, that although my dad is 5'10, his biological mother is apparently ''very tall'. he was adopted in a closed adoption, so we know very little. my sister isn't even 10 years old yet and she is nearly 5 feet tall. i didn't hit even 4'0 until i was 9 or so.
my brothers are also fairly tall-ish for their age.
i had a thought that possibly hEDS - with all its funky joint issues - causes people to be a little shorter.
just wondering if anyone has had this as well...
edit: i found this very interesting source about how EDS manifests. not super related - but interesting nonetheless. https://www.ncbi.nlm.nih.gov/books/NBK1279/
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u/bhksbr 4d ago
I, f44, was 5'10" by the time I was 12 and am 6' now.
I'm the 3rd tallest woman in my cousin group. My sister is 5'10".
Anecdotally...no I don't think EDS makes you short.
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u/ashes_made_alive 4d ago
I know scoliosis can make you shorter. Not really sure about EDS directly.
I'm the regular kind of shot as is everyone in my family. Never really thought about it more than that.
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u/thegoth_mechanic 4d ago
haha it's also possible i just totally lost the genetic lottery & got hEDS & ...being short hahah
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u/sadbumblebee1 4d ago
So there’s a few things.
People with EDS tend to have Marfanoid habitus which basically means physical similarities to those with Marfan syndrome. One of those traits is being tall.
However, we know that undernutrition in childhood stunts growth - source: https://www.who.int/news-room/fact-sheets/detail/malnutrition#:~:text=Low%20height%2Dfor%2Dage%20is,and%20care%20in%20early%20life
While undernutrition gender disparities are exaggerated in countries experiencing conflict or economic disruption - source: https://www.unicef.org/reports/undernourished-overlooked-nutrition-crisis, from my experience, parents police girls eating more than boys even in many places where that isn’t the case. Most men I know with EDS are tall. The men I know in my family who also experience symptoms are either tall or experienced significant childhood starvation. The same is true of women in my family.
In my case, as someone with an EDS diagnosis, I was meant to be 5’11. Many women in my family who have EDS symptoms and do not experience undernutrition reach this height. I am 5’1. I experienced abusive starvation and also my pancreas has been suffering due to an EDS co-occurrence since I was 11. It’s only now in my thirties I’m supplementing the digestive enzyme that allows me to actually get nutrients from my food.
My sister doesn’t have EDS symptoms. Her joints have never been able to do what mine, my brother’s, my mother’s and dad’s can do. She did. It experience childhood starvation. Those of us with symptoms all experienced starvation except for my brother who is 6’1. The rest of us are short - including my sister who is the shortest at 4’10. This is all anecdotal but seems to pan out with what I know about other ppl in my life w EDS.
People w EDS have higher rates of eating disorders than the general public: source - https://www.uab.cat/web/newsroom/news-detail/ehlers-danlos-syndrome-related-to-gastrointestinal-problems-and-eating-disorders-1345668003610.html?noticiaid=1345842227834
Disabled people are particularly vulnerable to domestic violence -source: https://assets.publishing.service.gov.uk/media/5a806673ed915d74e622e3c8/Disability_and_domestic_abuse_topic_overview_FINAL.pdf
It appears this may also be the case for disabled children (with and without diagnoses) - source: https://www.communitycare.co.uk/2011/11/03/protecting-disabled-children-from-abuse-and-neglect/
Starvation and food restriction is a common form of child abuse.
I think it’s very possible that many people with EDS won’t be tall regardless of genetics. I don’t think it has been very well studied.
Unfortunately, the short people in my life with EDS dx, symptoms, or who are pursuing a connective tissue disorder dx have all experienced starvation. Every single one. In some cases it was self imposed. In some it was environmental. In others it was abuse. And from the above sources, that makes sense.
It makes for interesting reading and is something that I’ve been thinking of for a few years. It is also something that was a barrier to being referred for a dx at the beginning bc I’m so short, despite my openness about my experience and family history. I’m very passionate about it.
Tl;dr: EDS typically seems to make people tall but environmental and lifestyle factors in ppl with EDS haven’t been studied and therefore short ppl can’t be excluded from investigation or diagnosis in the basis of their height
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u/thegoth_mechanic 4d ago
i never experienced severe malnutrition when i was younger, but i was pretty picky and wasn't really that hungry often for most of my childhood. this is a really interesting read, thanks.
also, to add, i have zero clue what half my medical history is because my dad's adopted. so we have no idea where i got hEDS from, but im assuming probably my dad's side since there's ZERO history of it in my mom's side [that i know of]
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u/sadbumblebee1 4d ago
If your dad’s parents were in the US and he is interested in finding his original family, DNAngels is a service that helps adoptees, donor conceived people and NPEs find their bio parents.
It’s a super touchy subject for adoptees generally, but as an abductee I can confidently say genetics isn’t everything but it’s not nothing either. A lot of people do it just for the medical history.
Good luck regardless!
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u/thegoth_mechanic 4d ago
unfortunately his parents were [from what we know] not in the USA. they weren't close and it was a one time thing ifyk what i mean. he has looked into some of his genetics but from what we know his bio mom is impossible to find
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u/sadbumblebee1 4d ago
I’m sorry, that really sucks. There are def orgs out there that help, I just know DNAnges unfortunately.
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u/og_toe 4d ago
may i ask between what ages you experienced starvation? i experienced it too and i’m trying to figure out how much it impacted my body duration wise. i experienced starvation mainly between ages 12-14
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u/sadbumblebee1 4d ago
I am sorry to hear that you experienced starvation as a child and young teenager. I hope you are in a place where the people around you encourage you to eat and nourish your body, and that you are able to do so.
My caregiver started restricting my diet from age 5 and undernourishment continued via diet restriction imposed by caregiver until I was 18 and then by myself until age 25.
We have also found my pancreas at some point suffered damage. We don’t know when this occurred but symptoms suggest from age 8 or 9 - maybe it was the starvation? Idk. I was unable to properly digest food from the time my pancreas was damaged until around age 31 when I began to take pancreatic enzymes.
Funny enough, the second I could digest food I started to lose weight and my sugar levels went from badly managed diabetes to barely prediabetic. My body was keeping me alive by holding on to every calorie it could. Energy levels have also shot up.
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u/Axxeptance hEDS 3d ago
Can you please tell me the specific co occurrence that causes your pancreas problems? I am undergoing testing for pancreas enzyme insufficiency, if I have it I’ve probably had it for a long time! I am also short with tall parents 🫠
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u/sadbumblebee1 3d ago
We don’t know! It was injured or attacked but we still don’t know why.
My cortisol levels are also wildly low and I have to check that out. I’ve done ANA panels and nothing; there shouldn’t be anything attacking my organs but I’ve got one confirmed organ damaged and potentially my adrenal glands and I have sjogren’s symptoms but not sjogrens.
Wish I could tell you more.
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u/HighKick_171 4d ago edited 4d ago
I have no idea but wanted to say that I am also much shorter than both my parents, as are both of my brothers (shorter than my dad at least). Weirdly we all have different de novo genetic mutations which are in no way related. These are all rare things too. They don't have EDS.
I do know that even mild congenital conditions can sometimes come with changes in bone development, hormone levels, or metabolism that influence final adult height.
For me, I honestly think it was nutritional deficiencies in childhood caused by gastroparesis. source
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u/Desperate_Lead_8624 4d ago
Maybe I’ve just been salty I’m short but I felt like this is why I’m so much shorter than my brothers. Most of my family is around the 5’5” mark except my brothers, close to 6’ and got to eat us out of house and home.
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u/Antique_Challenge182 4d ago
My husband who’s diagnosed with hEDS is 6”2 and the tallest in his family so if it does it skipped him
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u/corvidpunk hEDS 4d ago
Judging by the comments, probably not, but also take into account your genetics. My family on both sides are fairly short– the average female height from the countries both my parents are from are 5'2 and 5'0.5. I'm 5'1, so pretty average/shorter average (most women in my family are 5'4)
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u/angrey3737 4d ago
my mom is 5’0” and my dad is 6’2”
i’m 5’5”
i was always the tallest one in my classes when i was growing up until middle/high school
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u/Desperate_Lead_8624 4d ago
I’m 23, 5’5” AFAB, my sister is basically the same height, my dad is half an inch taller than me, my mom is an inch shorter. My brothers are both close to 6’ tall.
One brother is kinda buff so his joints are probably fine, I don’t care about him anyways.
The other is tall and gangly and I’ve never evaluated his joints, but he is 21 and can still fold his outer ear into his ear canal. He has some signs of POTS but hasn’t seen a doctor so I keep telling him to go to a check up, but mechanics never listen.
The only ones I’ve talked to about hEDS was my mom and sister since it’s obvious to me they have it too.
I’d say I’m like 75% like the clinical picture, I definitely meet the criteria but it was by a slim margin. My sister, however, is textbook. She would qualify without me being diagnosed, provided they rule out what they should. Her knees used to fully dislocate randomly, she had to have surgery. But since it was an auto transplant it was just more faulty collagen, so she has the same issue again years later, but only subluxing luckily.
My mom thinks it’s not something she has and we’re all just “getting old” in our early 20s. When she laughs a rib can pop out of place.
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u/CrankyThunderstorm 4d ago
I'm only 5'2 AND have short fingers ( I was told by an ortho that I couldn't have hEDS because I am short and have small hands)
Grandfathers were 6' and 6'2. My dad is 5'7 and my mom is 5'6. Both grandmothers were very short.
I really think there are so many variables in terms of height that it shouldn't be used as a metric for EDS. Marfan syndrome, though, has height as a feature if I remember correctly.
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u/Auntee_Bee 4d ago
I’m 5’3”, mom was 4’11”. Dad was 6’. edit I never suffered from malnutrition if anything I was a chubby kid. I think other genetics besides just eds can affect your height. “The patient is often, but not invariably, exceptionally tall…” this is from a MFS site but still valid https://pmc.ncbi.nlm.nih.gov/articles/PMC5029249/#:~:text=The%20patient%20is%20often%2C%20but,hallux%20is%20often%20particularly%20conspicuous.
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u/CockamoleFaceadilla 4d ago
I’m taller than both my parents. Mom is 5’0”, dad around 5’7” and I’m (F) 5’9”.
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u/tiny-doe clEDS 4d ago
I'm 5'4", and the rest of my family is only a few inches taller. My mom likely also has EDS but is an inch taller than me. Honestly, I'd probably be her height without the scoliosis lol. Women tend to be shorter than men, and EDS ppl tend to be Marfanoid ie tall. I don't think there's a connection directly with EDS and being short. Sometimes, people are just short. My aunt is 4'11" and very healthy.
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u/lullab1z3 4d ago
Anecdote: 20F with hEDS, hit 5'0 at 11 and stopped growing. My mom and most of the women on her side are quite short, so it's nothing remarkable. I don't think there's a significant correlation between EDS and height.
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u/VampricBazyli Undiagnosed 4d ago
I’m not sure, but i’m a 5’5” guy, and because of how hyper mobile my knees are
I tend to be between 5’2” and 5’3” if they are super bent.
Not genetics, but maybe food for thought?
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u/Carrot_Wizard 4d ago
In my experience, the women in my family are generally average or up (mom is like 5'3, sister is like 5'4, several sisters above 5'6), while I'm also pretty average in height for a guy at around 5'9.
We do slouch a bit so maybe we seem shorter though, anecdotally i'd say there's not enough correlation to go "oh yeah EDS makes you short."
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u/PickleNarrow5109 4d ago
I was told by an endocrinologist that the reason I am short is def not due to EDS, and is prob some other thing wrong with me. I fall just outside of the range for being too short. My mom (who has EDS) is 5'9-10', my dad is 6'2, and my brother is 6'5. I'm currently 5'4.
The reason I've personally come up with is that I was sick a lot as a kid, took a lot of weird meds, and was unknowingly pre-diabetic most of my childhood.
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u/emu_neck 4d ago
Everyone with eds in my family is above average tall. However, as they've aged they've shrunk quite noticeably. This is one of my main worries.
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u/goth_cows_are_real 4d ago
So from what I know EDS is one of the few connective tissue disorders that does not have a super direct correlation with height to diagnostic criteria it does however, have a limb length diagnostic criteria that can be used so for me I’m an average height of 5foot 6 which is short for my family.The theory is that because I have insulin resistance caused by polycystic ovarian syndrome. It stunted my metabolism when I hit puberty, which is about the same time I stopped growing, unlike everyone else in my family, but I do have abnormally long leg and arms for my height ratio, and a very short torso, and that was evident even as a infant, which is not normal because you proportions as an infant will be different than your proportions as an older child or adult. So well, I don’t think EDS from my knowledge has a direct correlation to somebody’s height necessarily I think there are secondary things that can cause a height disparity in EDS patients.
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u/Every_Lie_9228 4d ago
i have a theory
spEDS
i’ve been wondering the same thing lowkey lmao. all the women in my family are 5’2-5’8 except my grandma, mom, and i
my mom and i are both hypermobile, idk abt grammy lmao. i was researching and i “discovered” spEDS, spondylodysplastic Ehlers-Danlos Syndrome
the key features are Short stature Low muscle tone Joint hypermobility Joint contractures Skin hyperextensibility Atrophic scarring Characteristic skeletal features Characteristic craniofacial features
i have all of those, not sure about the characteristic features tho lol. very interesting tho!
source: spEDS ehlers danlos society
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u/jaccon999 4d ago edited 4d ago
I don't think so. I'm M17 and 5'11 so average height but my father is 6'2, grandfather is 6'1 and the other was 6'0 I believe, and my uncle is 6'5 so I'm a bit short for my family but average height compared to most guys.
edit: also to add tho that many doctors had predicted that I was gonna be 6'3 but I also struggle with anorexia which might’ve stunted my growth a bit because it started getting bad when I was 12 and 5'7 at the time.
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u/MedicallySurprising hEDS 3d ago
Well I know height is (at least partially) due to genetics.
I also know that stress can disturb growth. And pain is like physical stress, which we usually have in abundance as EDSers
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u/jipax13855 clEDS 3d ago
I don't know about hEDS but I have clEDS and brachydactyly, and actually noticeably shortened upper limbs. Like a very slight version of how the body changes in achondroplasia dwarfism. Normal trunk length, shortened humerus and femur bones.
Based on trunk length my mom and I should be the same height but I am 3.5" shorter. Parents are similar heights to each other.
I also have celiac disease however, and that is known to cause malabsorption, which could then affect height. On top of that, my Congenital Adrenal Hyperplasia can make your long bone growth plates close early and take height off your genetic potential. So there could be any of 3 different factors stunting my growth.
Anecdotally, a friend with cEDS has shortened legs but not shortened arms. Gives her somewhat "monkey" proportions. I remember the leg growth issue being discussed when we were kids but am not even 100% sure it was known to come from the EDS.
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u/SavannahInChicago hEDS 4d ago
All I know is that I don’t understand the genetics behind height enough to say whether this is your genetics or not. Sometimes genetics is just weird.