A Study On The Possibility That Ehlers-Danlos Syndrome Might Lead To Adult Height Growth

Recently a women named Allison would write a brief message to the website telling me a rather interesting story about her own life which made me very curious.


First Message

Hi, I’m 25 and have grown an 1.5″ over the past year (measurements were confirmed at several different places at several different times of the day). I was 5’5″ at age 10 or 11 and only grew 3/4″ by my mid-teens. Most recently I was over 5’7″. The really odd thing is that I have DDD and my latest spinal MRIs have shown increased degradation. So if anything I should be shorter, not taller.

I did have a brain MRI in my teens and was told I had “an overly generous pituitary gland.” Do you think this could indicate an issue that needs to be examined by a neurologist?


My Reply

Your case is very interesting. Would you be interested in coming on to do a podcast episode on how your height has increased over the years?


Second Message

I’m a pretty nervous public speaker, so I don’t think I would be a good guest on a podcast. I’d be happy to answer any questions via email though.

I just spoke with my spinal orthopedist and he did say it was very unusual and the only potential cause he could think of was a pituitary adenoma. I was recently diagnosed with Ehlers-Danlos syndrome and joined an online support group for the condition. I’ve been talking to the online community and many have had a similar late life growth spurt, which is weird since most of us have osteoarthritis and should technically be getting shorter. So maybe there’s a link to EDS or maybe it’s just far more common than anyone has realized.


My Email To Her

Hello Allison,

First, I wanted to thank you for coming on the website and giving a comment about your condition and your late life growth spurt. This type of thing is something that I as a researcher have been searching for.

It is highly unusual for anyone to experience such a thing and I wanted to ask you a few questions about this.

1. First, would you mind telling me what website or forum you are getting the support for EDS?

My intention is to validate that your individual case is more common and has happened to other people. I am hoping to find maybe forum threads and posts which say that they realized that they have had an late life growth spurt to substantiate some claims.

2. I will be doing more research on your condition since it is a disorder I have not been aware off.

From just a quick look on the WebMDs and Wikipedia, your condition is extremely interesting and attractive as a research project.

3. It is perfectly okay that you don’t wish to come on the podcast. I will be happy to give your message to the listeners because they are desperate for some good news.

4. Can you tell me the numbers, like how tall you were before, how tall you are now, at what age you experienced the growth, and your growth pattern throughout life?

Thank you again for any clues on this endeavor.


Her Email Back

Hi Michael,

1. The Ehlers-Danlos National Foundation has a support forum on inspire.com.

2. If your intention is to further research the condition, they just opened up a dedicated research facility in Towson, MD at the Harvey Institute for Human Genetics. The leading authority on the condition is Dr. Francomano.

These are the two best websites for more information:

http://www.ednf.org/index.php?option=com_content&task=view&id=1347&Itemid=88888968

http://www.ncbi.nlm.nih.gov/books/NBK1279/

4. I was taller than most kids for most of my childhood. By the time I was 10, I was already 5’5″ but only grew 3/4″ over the next couple of years and then stopped in my mid teens. I see my general practitioner two times a year (along with a host of specialists) who measures me at every visit. This past visit (I believe it was in August) I was measured at over 5’7″ without shoes on. Since then, the measurement has been replicated at other medical facilities.

A lot of people with EDS that I spoke with attributed the late growth spurt to pilates and physical therapy. We have a tendency to have many disc herniations, DDD, and pes planus, so I can see how orthotics and improved posture could add an extra inch. However, this has not been the case for me.


My Last Message

Thank you for your quick response.

I hope that you will find a way to minimize the pain. Is there anything I can do for you since you have been so helpful?


Her Last Message

Just help raise awareness on EDS! So few people (even doctors) really know what it is, making it difficult to seek medical care.

I was just trying to find reasons for the mysterious growth spurt and 99% of the sites I found were just sketchy people trying to convince others they had a magical pill to increase height. Your site was the only one I found that seemed honest and informative, so I was just hoping someone might have an explanation.

But I’m sure I’ll get some answers soon. I know most people would be happy to start growing again, but it’s so unusual that I don’t want to just assume it’s a benign occurrence and ignore it.

Thanks for the interest!

The Research

From the way this person was answering my questions it seems that they are being genuine and not lying about this type of occurence. She did claim that other people who was suffering the same condition as her, with a rare condition known as Ehlers-Danlos Syndrome also claimed that they saw increased height in adulthood, although she said at the end of our exchange of messages that they could have gotten that from pilates or physical therapy. Usually the Ehlers-Danlos should actually lead to reduced height since people develop scoliosis, arthritis, and other joint related problems from having such flexible joints and skin.

I would look at the website Inspire.com and find the Support Group she was talking about from typing in the term “Ehlers-Danlos Syndrome” into the search bar at the top. Click HERE for the results. I did not read through every comment or post but it seems that this condition causes a lot of pain which is often very hard to diagnose.

Many people would think EDS is actually fibromyalgia. The thing about Fibromyalgia is that it’s exact cause is not known. Fibromyalgia is often used as an umbrella term to refer to any type of pain that is in the joints, skin , and muscle as well as fatigue. In my opinion, the doctor is misdiagnosing the patient suffering from a still undiagnosed, unknown disorder at the time.

What often happens is that when a physician is not knowledgeable enough on a certain area of medical field, and their patient gives them the symptoms of fibromyalgia, they are too quick to call it fibromyalgia. The reason is because it is easy and simple. I personally believe that  the disorder known as  Fibromyalgia does not exist, but is actually the summation of a bunch of symptoms of something else that was never diagnosed accurately. It is a disorder/symptom created by unknowledgeable physicians to write off their patient’s pains.

So my research into this new disorder begins, with the usual google and wikipedia search. A search on Google turns up mainly the Wikipedia article on Ehlers-Danlos Syndrome

The two studies that she linked to are…

  1. Ehlers-Danlos Syndrome, Hypermobility Type
  2. What is Ehlers-Danlos Syndrome?

After spending a good half an hour reading up on the disorder, this is what I have learned so far.

From Allison’s 1st source, I would learn that the EDS type known as Hypermobility Type is the least severe. The skin is described to be soft and “mildly hyperextensible”. Dislocations happen a lot. This often eventually lead to degenerative joint disease. Chronic pain will set in and it will decrease both mental and physical well being. Bruising will increase.

To diagnose this condition, a proper family genetic history will need to be done. The actual mutation that causes this disorder is not known yet. The actual way that at least the hypermobility type of EDS gets transmitted is through autosomal dominant process, meaning that the child of a person with the disorder has a 50% chance of getting it, but if two parents with the mutation had a child, that child would have a 100% chance of getting it.

To manage this disorder, since there is no cure, people focus on pain management from medication and use wheel chairs, walkers, canes, and also get physical therapy to reduce the chance for skin tearing and joint dislocations. Extreme care is taken to avoid unneccesary injuries.

There is also a digestive system effect from the disorder. It causes all sorts of intestinal disorders like…

  1. gastritis
  2. reflux
  3. delayed gastric emptying
  4. irritable bowel syndrome

From Allison’s 2nd source, I would learn that EDS  actually is not one type, but has 6 types of disorders. It is mainly characterized by two conditions, which is the hypermobility of the joints where joints can be pulled much farther in directions and degrees than what it should normally be ale to to, and the stretchability of skin. The skin is usually soft and easy to break and bruise. It leads to scarring very easily and when the skin breaks, the ability of the scar to heal is decreased a lot.

It seems that Ehlers-Danlos syndrome is actually kind of common, currently believed to infected 1 out of every 3000 people on average and it does not discriminate on race or sex.

It is a genetic disease which is passed down hereditarily through two ways, autosomal dominant and autosomal recessive. It is rather hard to diagnose the condition of Ehlers Danlos Syndrome and it is harder to diagnose which type of Ehlers Danlos Syndrome someone might have out of the 6 that is currently classified. Thee disease does not really decrease life expectancy except when it has an effect on the vascular tissue structure’s integrity. The disorder does mean that even blood vessels can tear easily. If a major vein or aorta is torn, then that would lead to early death.

From Wikipedia I would learn…

It seems that Ehlers Danlos Syndrome is caused by a defect in the synthesis of Collagen, whether type I, III, or V. It is interesting that it is not stated that Collagen Type II synthesis is disrupted. That means that hyaline cartilage should still be relatively intact. Collagen is in tissue to resist deformation. If the collagen is removed, then the body looses it ability to push back against any type of mechanical outside stimuli, causing the body to deform and possibly break as a result of any heavy loading. The tissues that are made of Type 1, 3, and 5 Collagen will become more elastic and maybe even become plastically deformed.

The wikipedia article is much more advanced and longer than I cared to read so I will just cherry pick the parts which I felt is most important for the reader who is only interested in knowing whether the disorder might give us a clue on how to increase height in adulthood.

  • The joints themselves develop hypermobility. 
  • Osteopenia aka low bone density
  • Stretchy ligaments and tendons which often leads to tearing
  • Deformities of the spine can occur leading to scoliosis and kyphosis
  • The joint also develops extremely high chance for dislocations and subluxations
  • Chronic Degenerative Joint Disease
  • Early onset of advanced osteoporosis

Implications For Height Increase Applications

Allison admits in our exchange of emails that it is more likely that many people have gotten an increase in height in late life because they started to get physical therapy and do pilates to eleviate pain from the symptoms of EDS. It seems that people who develop EDS end up more often on the extreme ends of height distribution. They are either extremely tall or extremely short. The arthritis and spinal issues which cause limb joint and vertebral curvature.

The only way to explain what happened with her, why she has seen increased height in adulthood, is probably is that because the joints are so hypermobilized and people with EDS basically have something similar to double jointedness, it is possible that her increased measured height is from her vertebrate, specifically cervical vertebrate being popped open slightly more when she stands up fully straight for a height measurement. There is no way that the knee joints can be popped up slightly due to joint hypermobility due to the laws of physics.

There is no way that a person can use muscle action to pull the upper part of their body higher from their lower leg portions, which is what would have to happen for a person to look taller for a height measurement since that would be the equivalent of someone pulling themselves up against the gravitational force of their weight and levitating.

There is a 2nd possibility on why her increase in height is possible

Since she did say that her doctor suspects she has pituitary adenoma and she was said to have had a larger than average pituitary gland in childhood, it could be that she does have an increase in GH release into her system than average. For most people, that increase in GH and the overactive pituitary gland would not lead to height increase.

However she has two disorders that is going on. The joint hypermobility that maybe her knee joint allows for the tibia and femur to be pulled slightly out of their sockets when she sits down. The GH increase floods the articular chondrocytes and causing the increase in articular cartilage thickness. When she stands up, the increase cartilage layer thickness means that she became taller.

4 thoughts on “A Study On The Possibility That Ehlers-Danlos Syndrome Might Lead To Adult Height Growth

  1. Alice

    I found your article interesting.

    My husband and I both have EDS, different types as do our children. I cam here looking for an answer about my daughter. She has a long story that I wont go into, but your article hit home on all points with her.

    I thought I would share about my husband. When he graduated from high school he was 5’10” with a size 11 shoe. He joined the Marines a few years after high school and served six years. We married when he was 24. At age 24 he stopped growing. He is now 6’1.5″ and has a size 14 foot on the left and 15 on the right. During the years before we married I personally witnessed his shoe size increase from a 13 to the 14/15. He has flat feet, but he had flat feet when he joined the service.

    The reason I cam here is because my daughters EDS side effects have increased exponentially over the last year. She seems to be going through a growth spurt. She is 12, the same height I am 5’4″ but she wears a size 10 shoes where as I wear a size 6.5. I stopped growing in the 8th grade and she is two years younger than me at the same height. My concern is that her height growth will cause more problems with her EDS issues. The research I have done says a girl on average grown 3 inches a year during puberty and stops growing at age 18. If that is accurate and she follows this model, at the age of 18 she would be 6’10”. I can not even imagine this can be true.

    Anyway, thought you might find it interesting.

    Reply
  2. Gwyn

    I’m almost 23 and am not diagnosed with Ehlers-Danlos, but suspect that I have it or a similar disorder. I was measured at 5’5″ at age 19, and am 5’7″ now.

    In case there is relevance- I got pregnant within this time, and my hip structure reshaped to a more painful, wider array. I’d think that would make me shorter- I wonder if I’d be 5’9″ if I hadn’t gotten up the duff.

    Reply
  3. Cynthia Gee

    Hello – I have been diagnosed with hypermobility disorder, and I had a growth spurt in my 30s.
    I was 5’3″ and wore a size 9 shoe by the time I was 14, and likely would have grown taller at the time, were it not for the fact that I developed anorexia nervosa in my early teens.
    By the time I finished college, I was well over the anorexia and I grew another inch to reach 5’4 1/2″, and my shoe size increased to size 9 1/2.
    THEN, in my late 30s, I began to grow taller again. By the time I was 42, I was 5’6″ and wore a size 10 shoe and a women’s size Large glove….and now, at age 57, I wear a size 11 shoe and a men’s size Medium glove, since women’s gloves no longer fit me at all. I’m not getting taller anymore – I’ve actually shrunk a half inch and I am now 5’5 1/2″.

    Reply
  4. Samuel

    I’m also suffering from EDS and while my joints and posture are getting worse, I also started growing again.
    Before I was 172cm tall in the morning since the age of 12 and now, at 22, I started growing again and am already 177cm tall in the morning. Also my foot size went up. And I don’t have any pituitary abnormality (confirmed by MRIs).

    Reply

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