Have you ever thought of taking collagen supplements for Ehlers-Danlos Syndrome?
Should people with Ehlers-Danlos Danlos Syndrome or joint hypermobility even take a collagen supplement?
Many people wonder if collagen supplements can help people with Ehlers-Danlos Syndrome since it’s considered a collagen disorder.
As a registered dietitian with Ehlers-Danlos Syndrome, I want to help answer this question.
Let’s dive in!
Ehlers-Danlos Syndrome and Joint Hypermobility
First, let’s review what Ehlers-Danlos Syndrome and joint hypermobility are.
Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders that affect the body’s ability to produce collagen. Collagen is a protein that provides strength and elasticity to connective tissues in the skin, joints, blood vessels, and other organs. EDS is often characterized by joint hypermobility, which refers to an increased range of motion in the joints beyond what is considered normal.
While there are multiple types of Ehlers-Danlos Syndrome, the most common type is called hypermobile Ehlers-Danlos Syndrome (hEDS). People with hEDS may have joints that feel like they slip out of place and often experience joint or muscle pain. There are often other symptoms as well, like gastrointestinal issues, fatigue, easy bruising, poor skin healing, etc.
If someone does not meet the diagnostic criteria for hEDS, a healthcare team may tell a patient that they have joint hypermobility. People with hypermobility may still experience similar symptoms to EDS, like joint and muscle pain.
While there is no cure for Ehlers-Danlos Syndrome or joint hypermobility, it’s important to manage symptoms to have a better quality of life.
Understanding Collagen’s Role in the Body
Collagen plays a crucial role in the body. It is the most abundant body protein that provides structure and support to various tissues, including the skin, bones, tendons, and ligaments. Collagen helps maintain the strength, elasticity, and integrity of these tissues, contributing to their overall function.
However, people with EDS may have collagen that isn’t as strong or as supportive as it should be. Having weak collagen leads to a variety of issues, like difficulty with being physically active and struggling with tasks like opening jars or lifting something heavy. Some people with EDS, have such “loose” tendons and ligaments that their joints can even partially or fully dislocate with very little force.
Is hypermobility a lack of collagen?
It’s worth wondering if the loose connective tissues seen in EDS and hypermobility are due to a lack of collagen.
However, it’s believed that hypermobility is not the lack of collagen, but the lack of properly formed collagen.
Each type of EDS is due to specific genetic changes (mutations) that affect the structure or function of collagen. So, the symptoms associated with EDS are usually due to either the poor strength of collagen or not having enough structurally normal collagen.
Without the proper genetic instructions, it’s impossible to have correctly formed collagen that can be incorporated into tissues like skin, tendons, ligaments, etc.
One thing to note is that there are a variety of different types of collagen made by a variety of genes. However, the genetic cause of hEDS has not been identified yet. This means that scientists are uncertain about which types of collagen are affected in people with hEDS.
Collagen supplements for Ehlers-Danlos Syndrome or hypermobility…do they help?
Unfortunately, no scientific evidence suggests that collagen supplements can help with EDS or hypermobility.
Why doesn’t collagen supplementation help with a collagen disorder?
Because EDS (and potentially hypermobility) are caused by genetic mutations, the body will always form incorrect collagen.
DNA is like the “blueprint” for protein construction. Even with all of the right building blocks, the incorrect blueprint will always make an incorrect structure.
So even if someone with EDS or hypermobility takes a collagen supplement, their body will continue to make incorrect forms of collagen.
Collagen supplements don’t help people with EDS or hypermobility because they are broken down before absorption
Collagen supplements do not help people with EDS because the body breaks down all dietary proteins into individual amino acids, and then relies on its DNA for instructions on how to build body collagen. With EDS, the DNA instructions on how to build body collagen are incorrect, so no matter how much collagen someone ingests, it will not affect the collagen their body produces.
The only exception is if someone does not consume enough dietary protein overall for an extended period of time. In this case, they may notice benefits from starting a collagen supplement simply because it helps them increase their overall protein intake. Adequate dietary protein intake is required for body protein synthesis.
Should people with EDS or hypermobility take collagen supplements?
While taking a collagen supplement is considered safe for most people, it has not been proven to be effective for people with EDS or hypermobility.
It’s really up to an individual if they want to spend the money on a supplement that might not help them feel better.
As a registered dietitian with EDS, I do not sway my patients one way or the other when it comes to collagen supplements. If one of my patients wants to try a collagen supplement and could benefit from some additional protein, I support them. If another patient only wants to try supplements that have been scientifically proven to be effective for their health goals, I inform them that collagen might not be something they are interested in.
If someone wants to try any supplement, including collagen, I recommend choosing a third-party tested supplement to avoid the risk of unwanted ingredients.
Third-party tested collagen supplements:
- Vital Proteins Original Collagen Peptides
- Ancient Nutrition Multi Collagen Protein
- CB Supplements Multi Collagen Protein
Remember to consult with a healthcare professional before starting any new supplement plan.
In the future, I hope additional research provides more insight into the causes of hEDS and potential therapeutic strategies. Wouldn’t it be nice if it was as easy as taking a collagen supplement? We can only dream!
Other nutrition and lifestyle considerations
A well-rounded approach to managing EDS is important because it involves addressing various aspects of the condition.
When it comes to nutrition, getting enough protein, vitamin C, zinc, copper, and other nutrients is crucial for supporting collagen health. It’s extremely important for people with EDS to meet their nutrient needs to help their bodies produce the best quality collagen that they can, even though it will never be perfect.
Lifestyle changes, in addition to maintaining a healthy diet, like engaging in regular exercise, managing stress levels, and getting adequate rest and sleep are often helpful as well.
Individuals with EDS should work closely with healthcare professionals who specialize in managing the condition. This may involve a multidisciplinary team approach, including physical therapists, occupational therapists, pain management specialists, and registered dietitians. These professionals can provide personalized guidance, recommendations, and support based on the individual’s specific needs and goals.
Collagen supplements do not have scientific evidence to support their effectiveness in treating Ehlers-Danlos Syndrome (EDS) or hypermobility. EDS is a collagen disorder, but genetic mutations prevent the body from forming properly structured collagen. Collagen supplements are broken down during digestion and do not impact the body’s collagen production. While safe for most people, collagen supplements may not provide benefits for individuals with EDS or hypermobility. A well-rounded approach to managing EDS, including proper nutrition and lifestyle changes, is recommended. Consulting with healthcare professionals is advised before starting any new supplement or treatment plan.