Connective Tissue is present in almost every part of our body.
The skin, bones, joints, internal organs, blood vessels and even in our eyes.
Connective tissue is made up of cells, some tough material, and a protein called collagen.
In fact, collagen is the most abundant protein in the animal kingdom.
Connective Tissue is what holds the structures in place, it is the glue that keeps everything
tight and at the same time flexible. There are situations that the connective tissue
is not strong and will not be able to hold the structures in place.
The most common signs are stretchy skin, easy bruising and hypermobile joints.
This is similar to building a house made without wood and mortar.
It will not hold strong and it will start crumbling.
This is what Ehlers Danlos Syndrome, or EDS, looks like.
EDS symptoms may start at an early age, and they affect various parts of the body, however,
for many individuals it takes many years or decades for them to receive a confirmatory
diagnosis and initiate proper treatment. In this video I will explain why it takes
a long time for physicians to make the diagnosis of EDS, what can be done to improve the lives
of people with EDS, and how we can work together to create awareness of this disease all over
the world.
So, let s talk about Ehlers Danlos Syndrome, or EDS, today.
How common is it? EDS is no so rare as we thought. It is estimated
that 100,000 Canadians live with EDS. It affects one in 5,000 individuals.
Why it is important to talk about EDS? What makes EDS so complicated and hard to
diagnose is that there are various types of EDS, not just one.
What causes EDS? EDS is caused by a genetic disorder, and there
are many different genes that can be affected, but depending on which gene is affected, the
presentation of EDS will be different. What are the symptoms of EDS?
There are 13 forms of EDS. In all forms of EDS, it is common to have symptoms of fatigue,
chronic pain and mood disorders. The most common types are hypermobile EDS,
classical EDS, vascular EDS and Kyphoscoliotic EDS
The hypermobile EDS may have the following symptoms:
Joint hypermobility and joints that dislocate, partially or total dislocations. And when
these happens these dislocations cause intense pain. It may affect large joints like elbows,
knees, or small joints like the temporomandibular joint that connects the jaw to the skull,
the fingers or toes. In the skin, it will present as soft skin,
very stretchy and that bruises easily In the Autonomic Nervous system, the symptoms
are fainting, dizziness, and an increase of heart rate after standing up, which is called
POTS, postural orthostatic tachycardia syndrome. In the Gastrointestinal system, the symptoms
of abdominal discomfort, malabsorption of nutrients, diarrhea or constipation
There is also Dysfunction of the immune System causing hives, anaphylaxis, itchiness, and
malaise In the Peripheral Nervous System symptoms
of numbness, pain, tingling in extremities, problems of coordination and balance.
Because the connective tissue is what holds the organs in place, there might be Prolapse
of some organs, including mitral valve of the heart. There might be urinary retention
or incontinence. All of the above symptoms usually lead to
chronic pain that is debilitating and affects many parts of the body.
Classical EDS will affect more the skin, but will also have joint hypermobility, and organ
prolapse
Vascular EDS is a rare type of EDS. Thanks God, because it is the most serious type of
EDS. It affects the blood vessels and can lead
the internal organs to split open and life-threatening bleeding.
Kyphoscoliotic EDS is rare, and the person will have scoliosis of the spine, which is
an abnormal curvature. Usually it starts in childhood and gets worse
in teenage years. How do doctors make the diagnosis of EDS?
The diagnosis usually involves an assessment of hypermobility of the thumb, pinky finger,
elbows, knees and lumbar spine.
Sometimes, a skin biopsy is helpful to confirm the problem, but the most definite diagnosis
is genetic testing. However, the most common type of EDS, the
hypermobility EDS still does not have a genetic test to confirm it.
Physicians are not trained to think of EDS. Because the symptoms may affect people differently,
there will rarely be two patients with the same group of symptoms, so it is difficult
to create a diagnostic pattern that applies to everyone.
Here, two patients with EDS, but they may present with completely different symptoms:
This person will present with dizziness, fatigue and chronic pain
This person will present with balance and gait problems, shoulder dislocations and headaches
And to complicate even more, there are some forms of EDS that do not present with major
joint hypermobility. Another problem with the diagnosis and treatment
of EDS is that the disease affects many organs and systems, so, the patients end up seeing
various specialists, and they don t connect the dots with each other.
For example, The patient will see a gastroenterologist
for digestive problems A cardiologist for the cardio vascular problems,
mitral valve prolapse and fainting A neurologist for neurogenic bladder and neuropathic
pain A neurosurgeon for the Chiari malformation,
cerebral fluid leaks, Cervical-Cranial Instability, and tethered cord syndrome
An orthopaedic surgeon for the recurrent joint dislocations
An endocrinologist for hormonal problems A pain specialist for chronic pain and fatigue
A physiotherapist for joint stability, splints, orthotics and positioning
Wow, after all of this, the patient will need a psychologist or psychiatrist for mental
health support in dealing with loss and strategies to cope in living with chronic conditions
that affect mood, sleep and cause anxiety. Family physicians and specialist doctors could
be in the position to diagnose and treat EDS but there is great misunderstanding among
healthcare professionals about what EDS is, and too few that specialize in heritable connective
tissue disorders. What is needed to improve the care for people
with EDS? We need a better system where patients can
receive a timely diagnosis and specialist level care, without having to wait months
or years to see a specialist. We also need a holistic, evidence-based approach
that empowers patients and caregivers with education and reassurance.
We need primary care providers who are able to suspect the diagnosis at an early age and
refer to a multidisciplinary specialist clinic for diagnoses and treatment plan.
We need interprofessional teams of physiotherapists, occupational therapists, and psychologists
to maintain a functional restoration program that includes exercise interventions appropriate
for EDS. Are there exercises for people with EDS?
And talking about exercises for EDS, the types of exercises that these patients need are
not conventional, regular, common exercises. Because of the hypermobility and instability
of joints, bones, tendons, muscles and ligaments, the types of exercises have to be carefully
selected and individualized. In general terms, these exercises that we
recommend for people with EDS are SSARB Strengthening
Stretching or flexibility Low impact Aerobic exercise
Relaxation And Balance exercises
Strengthening It is very important to exercise the muscles
to maintain a good function and protection of the joints.
We recommend isometric exercises, which includes some form of resistance, without a lot of
movement of the joints. For example, here I m pushing against these
resistance bands, my muscles are contracting isometrically, but my joints are not moving.
Pilates, Yoga, Tai chi, are all great to build up core strengthening without a lot of movements.
Stretching Well, it seems counter-intuitive to stretch
a joint that is hypermobile. Yes, that is true, we are not talking about
over-stretching a joint that has already passed its limits.
We are talking about the other joints of the body that are stiff and contracted. Sometimes
it is just a gentle range of motion exercises that is necessary to move the muscles.
Don t forget that myofascial pain may also affect people with EDS, and the best treatment
for myofascial trigger points is stretching of the muscles.
Low impact aerobic exercises Walking, swimming, biking are all great exercises
to maintain a good cardio-respiratory function. If the person has POTS, they may find it hard
in the beginning, and feel dizzy. They can start slow and increase intensity gradually.
For the person with EDS, care needs to be taken to avoid dislocations and falls especially
when ribs can go out of place causing intense pain.
The goal should be aiming at 150 minutes per week of moderate exercise.
I recommend measuring your heart rate during the exercises, you can use a smart watch,
or a finger oximeter.
Relaxation exercises Don t forget to relax the body and mind.
Breathing exercises are excellent, especially at the end of a busy day, and before bedtime.
Body scan and mindfulness are good practices to be incorporated on a daily routine.
And Balance exercises There are various ways to improve balance,
you can use some exercises that I demonstrated in the video of osteoporosis. Make sure that
it is safe, and that you don t fall when doing these exercises.
One of them is walking in tandem. Walking on the tiptoes
Walking on the heels Walking backwards
Walking sideways And going up and down stairs
Other forms of exercises like yoga and Tai chi are also very helpful.
I would like thank the ILC Foundation in Canada for providing me with useful resources and
materials to produce this video. Visit their website at www.TheILCFoundation.org
Use the comments below to write your suggestions, ask questions, or suggest topics for future
videos. If you go to see more below this video, there
is a description of all products that I mentioned in this video if you are interested in purchasing
them. I added time stamps to this video, so you
can watch the parts that are useful to you, like the summary of these exercises.
Also, if you go to the description of this video below, there is a link to a document
that you can download and it summarizes all the content of this video, including the SSARB
exercises. Please, don t forget that this video is for
educational purpose only. If you have a condition that needs medical
advice, please talk to your doctor. And if there is an emergency, go to the nearest
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Thank you for watching. Good bye.