Can taking supplements improve elasticity, prevent injury, and reduce pain in Ehlers Danlos Syndrome (EDS) patients?

To help us answer this question, we first need to review what EDS is.

Ehlers-Danlos syndromes occur as a result of genetic mutations that alter the arrangement and mechanical integrity of the triple helix that forms fibrillary collagen. Fibrillary collagen is present in connective tissue throughout the body including joints, ligaments, skin, tendons, blood vessels and the gastrointestinal tract. Genes provide the instructions for building proteins including collagen.  When a genetic mutation is present, it can alter the final collagen produced, thereby affecting the way it functions in the body. This altered function can present in a variety of symptoms experienced amongst EDS and Hypermobility Spectrum Disorder (HSD) patients. There are 13 different sub-types of EDS, each with a genetic variant that has been identified. An additional sub-type of EDS, identified as Hypermobility Spectrum Disorder (HSD), does not have an identified genetic variant contributing to its cause. The symptoms experienced by individuals diagnosed with EDS and HSD can vary dramatically in prevalence and severity. Some symptoms are common amongst subtypes.  Some symptoms are seen only in specific subtypes of EDS and HSD, and some individuals present with varying symptoms within the same subtype of EDS.  In addition, there are a variety of co-conditions that may be present contributing to the overall complexity of symptoms experienced amongst EDS and HSD individuals including systems involving the neurological system, mucocutaneus including mucus membranes of the mouth and gastrointestinal tract as well as the skin, cardiovascular system including autonomic dysfunction, and immune system including mast cell disorders and fatigue.

Will taking supplemental collagen help me to make better collagen? 

Collagen is assembled in a triple helix design from the amino acids proline, glycine, lysine, and hydroxyproline. Amino acids are the building blocks of protein. Vitamin C, zinc, copper and manganese act as the cofactors to help support the formation of collagen.  Collagen makes up at least 30% of our whole-body protein content and there are currently 28 known different types of collagen that have been identified with further diversity within each subtype. 

Collagen from supplements typically comes from animal-derived sources. These include:

• Type I: bovine and fish bones, ligaments, tendons, hides, and skin, eggshells
• Type II: chicken cartilage and joint
• Type III: bovine skin, blood vessels, and internal organs
• Type V and X: eggshells

Different manufacturing processes can affect the structure, composition, and property of collagen produced. The different manufacturing processes can result in the following types of collagen:

• Insoluble undenatured native collagen (maintain triple helix design): Type I and Type II
• Soluble native collagen (maintain triple helix design): Type I and type II
• Gelatin (denatured collagen – no triple helix): Type I and Type II
• Hydrolyzed collagen (peptides and amino acids – no triple helix): Type I and Type II
• Vegan collagen or Vegan collagen builder: plant extracts, amino acids, vitamins, minerals.

Different collagens consumed within the diet are broken down within the GI tract to peptides and then amino acids for absorption. Once absorbed, our bodies genetic make-up will help to decipher what protein the individual amino acids will be reformed into and where within the body it will go.  If a genetic mutation is present that alters the formation and structure of collagen, the body will continue to produce denatured collagen despite the amount of amino acids or collagen supplemented by diet. In addition, there are not enough clinical studies to support additional supplementation of vitamin C, zinc, copper, or manganese in completing and supporting the collagen matrix in EDS and HSD patients.

I have heard of people noticing an improvement in pain on collagen supplementation. Could there still be a benefit in its use?

Collagen supplementation is being studied in individuals who experience pain or have been diagnosed with Osteoarthritis or Rheumatoid Arthritis.  Native collagen Type II has been shown to decrease joint discomfort and increase joint mobility when 40 mg/day was consumed potentially by decreasing inflammation in non-osteoporosis individuals. Hydrolyzed collagen may also have chondroprotective effects. Additional research is still needed on understanding the underlying pathophysiology of pain and research is needed in the EDS and HSD population to determine if collagen supplementation provides therapeutic symptom relief.

Research to date on nutritional supplementation for EDS/HSD has been hypothetical in nature. Further understanding into the types of collagen that is impacted by a genetic variant or sub-type of EDS is needed with further insight into how that affects function. Oral supplementation of collagen currently only covers about 3 different types of collagen making it unknown if this will have an impact on the type of collagen affected by your particular EDS subtype.  In addition, research involving a particular collagen product or collagen supplement in a specific sub-type of EDS/HSD is needed to determine if taking additional collagen proves to be beneficial.

When living with a chronic condition, especially when facing a variety of symptoms, you may want to inquire on your own or be influenced by social/medical media on specific diet or supplement protocols that promise an improvement in quality of life. Before trialing such regimens, there are some questions you may want to ask yourself.  These include:

• Does this reference speak specifically and reference research to EDS and/or HSD patients?
• Does this reference speak specific to my particular sub-type of EDS and/or HSD?
• Was the particular product recommended researched for my particular sub-type of EDS and/or HSD or co-occurring condition?

Each individual living with EDS and HSD is unique in their experience and it could significantly differ from the person next to them.  What works for one person may not work for the next. Therefore, hesitancy should be made around following advice with language that offers blanket protocols for all people with EDS or HSD. If you are struggling to manage the symptoms you are experiencing with EDS, HSD or a co-occurring condition, consider reaching out to your multidisciplinary team with a potential referral to a dietitian knowledgeable in EDS, if not already part of your care team.

Sources:

Ehlers-Danlos Syndromes: what part does nutrition play? Institute for Optimum Nutrition. Published April 13, 2023. Accessed May 31, 2024. https://www.ion.ac.uk/news/ehlers-danlos-syndromes-what-part-does-nutrition-play

Martínez-Puig D, Costa-Larrión E, Rubio-Rodríguez N, Gálvez-Martín P. Collagen Supplementation for Joint Health: The Link between Composition and Scientific Knowledge. Nutrients. 2023;15(6):1332. doi:https://doi.org/10.3390/nu15061332

Myths and Facts about EDS and HSD. The Ehlers Danlos Society. https://www.ehlers-danlos.com/myths-and-facts-about-eds-and-hsd/

Nadja NE | D by. The EDS Diet | Jeannie Di Bon. Jeannie Di Bon - Specialist in movement therapy for hypermobility and EDS. Published May 19, 2024. Accessed May 31, 2024. https://jeanniedibon.com/small-steps-role-diet-nutrition-hypermobility/

RD KM. Collagen Supplements for Ehlers-Danlos Syndrome and Hypermobility. EDS Nutrition. Published October 21, 2023. Accessed May 31, 2024. https://edsnutrition.com/collagen-supplements-for-ehlers-danlos-syndrome-and-hypermobility/

Ricard-Blum S. The Collagen Family. Cold Spring Harbor perspectives in Biology. 2010;3(1):a004978-a004978. doi:https://doi.org/10.1101/cshperspect.a004978

Zhou Z, Rewari A, Shanthanna H. Management of chronic pain in Ehlers–Danlos syndrome. Medicine. 2018;97(45):e13115. doi:https://doi.org/10.1097/md.0000000000013115