Your child is super flexible and a star gymnast. Unfortunately, her growing pains can be unbearable at times, and unresponsive to conservative care. Her knees can pop out of alignment while walking across the room. You are concerned. Your doctor thinks your daughter may be hypermobile. What is EDS? What are the different types of EDS? What causes EDS? What are common symptoms of EDS in children? What are the treatment options for EDS in children? What regenerative options exist? Meet MF. Let’s dig in.
What Is EDS? (Ehlers-Danlos Syndrome)
Ehlers-Danlos Syndrome (EDS) refers to a group of disorders that affect the body’s connective tissue including skin, tendons, and ligaments. It is a hereditary disorder which means you are born with it. EDS has many different signs and symptoms which can vary significantly from patient to patient. It most commonly affects the skin, joints, and blood vessels. The estimated prevalence for all EDS varies between 1/10,000 and 1/25,000 (1).
Are There Different Types of EDS? (Hypermobile, Classic, Vascular)
The three most common types of EDS are:
Hypermobile
Hypermobile EDS ( hEDS) is the most common form of EDS.
Classic
Classic is the second most common type of EDS. Previously is was also called EDS Type I & II.
Vascular
Vascular EDS is quite rare and is the most severe type of EDS. Vascular EDS is much different from Hypermobile and Classic EDS. In addition to loose joints, and translucent skin these patients are a risk for life-threatening rupture of the intestine, uterus, and arteries.
What Causes Ehlers-Danlos Syndrome?
Certain types of EDS are hereditary. This means that you are born with it. One of the underlying problems in patients with EDS is their production of collagen. Collagen is a protein that provides stability and strength. Collagen is the main component of connective tissue. Examples of connective tissue include ligaments, tendons, cartilage, and bone
Family history is also a risk factor.
EDS Symptoms (Joint Hypermobility & Pain)
Symptoms vary depending on the specific type of EDS and its severity. All types of EDS affect the joints. Common symptoms include:
Joint hypermobility. It can be found in up to 30% of children (2).
Fatigue ((3)
Anxiety
Muscle and nerve pain (3)
POTS: Postural Orthostatic Tachycardia is a syndrome that involves a problem in the central nervous system (4). Specifically, there is a dysfunction of the nerves that govern involuntary body functions such as heart rate and blood pressure.
Skin that easily stretches
Delayed wound healing
Treatment Options: EDS in Children
Although there is no cure for EDS, there are treatment options that can help manage your child’s symptoms and prevent further injuries. These include:
Medications
Anti-inflammatory medications are common to address the pain.
Physical Therapy
Physical therapy is the cornerstone of care and when appropriate should be the first-line treatment. Treatment options include strengthening, stretching, and balance. When appropriate, braces and splints are often used to provide stability.
Surgery
Surgery is rarely necessary unless a given joint has been severely damaged due to dislocation or trauma.
Regenerative Treatment Options for EDS in Children
At the Centeno-Schultz Clinic, we are experts in the treatment of ligament injuries. We pioneered a nonsurgical treatment for anterior cruciate tears in patients over 10 years ago. It involves using a patient’s own bone marrow-derived stem cells and PRP. We have published our clinical successes. We have used these skills and knowledge to treat the loose ligaments commonly found in EDS in children. Treatment options include bone marrow-derived stem cells and PRP. Both are powerhouses of healing that can accelerate healing and enhance stability. The integrity of a given ligament is easily evaluated in our clinic. Ultrasound is then used to precisely inject PRP or stem cells into the loose of partially injured ligaments. Injections without guidance commonly utilized in other clinics are below our standard of care as there is no guarantee that the PRP or stem cells are actually injected into the loose or damaged ligaments. The injections for some have been life-changing.
Meet MF
MF is a 12 y/o French girl with a known history of EDS and mast cell activation syndrome (MAST) who presented to the Centeno-Schultz Clinic with a 3-year history of headaches, neck pain, stomach pain, fatigue, visual problems, and frequent upper and lower extremity dislocations. Her knees, wrists, and shoulders would come out of joint daily creating pain and disability. This is referred to as a subluxation. Prior to her treatments at our clinic, she would have 3-5 joint subluxations per day. This severely compromised MF and her family. She was no longer able to attend school and required the use of a wheelchair. Her symptoms began after a traumatic ski injury. Treatment in France included rest, heat, ice, physical therapy none of which provided benefit.
MF underwent precise injections of PRP into the upper cervical facet joints, ligaments, and supporting ligaments in her shoulders, elbows, wrists, knees, and ankles. Her results have been miraculous. MF has had greater than 70% improvement in her headaches, neck pain, and stomach pain. She is no longer on medication for her stomach. Most importantly her shoulder, elbow, wrist, knee, and ankle joints are much stronger. She no longer requires a wheelchair, she has returned to school and now enjoys recreational activities such a horseback riding, and indoor climbing. She is now able to enjoy being a young woman. We are deeply honored to have had this opportunity to help MF and her family. She recently shared this video of her newly found level of activity and freedom. We are so happy for you!
In Conclusion
- Ehlers-Danlos Syndrome (EDS) is a group of disorders that affect the body’s connective tissue including skin, tendons, and ligaments.
- EDS most commonly affects the skin, joints, and blood vessels.
- There are three major types of EDS: Hypermobile, Classic, and Vascular.
- Most cases of EDS are hereditary which means you are born with it.
- Common symptoms of EDS include joint hypermobility, pain, fatigue, and elastic skin. Some children have POTS, a dysfunction of the central nervous system.
- Treatment options for EDS in children include medication, physical therapy, and surgery.
- The Centeno-Schultz Clinic are experts in the treatment of ligament injuries. Treatment options for children with EDS and hypermobile joints include precise injections of PRP into the injured ligaments.
- Meet MF who underwent precise PRP injections and was able to discontinue some of her medication and regain some of her childhood joy. Great job!
1.Germain DP. Ehlers-Danlos syndrome type IV. Orphanet J Rare Dis. 2007 Jul 19;2:32. doi: 10.1186/1750-1172-2-32. PMID: 17640391; PMCID: PMC1971255.
2. Simmonds JV, Keer RJ. Hypermobility and the hypermobility syndrome. Man Ther. 2007 Nov;12(4):298-309. doi: 10.1016/j.math.2007.05.001. Epub 2007 Jul 20. PMID: 17643337.
3. Hakim AJ, Grahame R. Non-musculoskeletal symptoms in joint hypermobility syndrome. Indirect evidence for autonomic dysfunction? Rheumatology (Oxford). 2004 Sep;43(9):1194-5. doi: 10.1093/rheumatology/keh279. PMID: 15317957.
4. Sobey G. Ehlers-Danlos syndrome – a commonly misunderstood group of conditions. Clin Med (Lond). 2014;14(4):432-436. doi:10.7861/clinmedicine.14-4-432