For over thirty years I worked with patients with various complex chronic illnesses. However, I now dedicate my practice exclusively to the care of patients with Ehlers Danlos Syndrome (EDS), which includes Joint Hypermobility Syndrome (JHS).
Ehlers Danlos Syndrome (EDS) is the name for a group of conditions, in which many joints are looser than normal, i.e. “hypermobile.” This means that the affected joints can bend further than most people’s. It’s a hereditary condition that usually shows up in childhood, but is often only diagnosed later in life, if at all.
By far the commonest type of EDS is “EDS, Hypermobility type” or EDS-H. Previously, doctors also referred to “Joint Hypermobility Syndrome (JHS)” which they thought was different from EDS-H, and generally less severe. However, most experts now believe that EDS-H and JHS are actually the same condition, one which comes in all grades of severity. Mild hypermobility can even be an advantage, for dancing ballet or doing gymnastics. But when severe, the loose joints hurt, get repeatedly dislocated or become damaged over time.
There are several other kinds of EDS besides EDS-H. They are much rarer, but some of them can have serious complications. Also, there are a few conditions in which joints may be hypermobile, that are not in the EDS group. The most well known is Marfan Syndrome. So, it’s important to make the right diagnosis.
There is much more to EDS than loose joints. People with EDS often have pains that don’t seem to come from their joints, but rather from nerves. They may be tired all the time, and run out of stamina in activities that most people can continue for much longer. They may sometimes be mentally foggy – enough to harm students’ class performance. They may have dizzy spells and blackouts. They may bruise and bleed much more easily than others. They may have various problems with their stomach and intestines. And although often very intelligent and academically-successful, EDS-ers may be hampered by anxiety, or panic attacks. And various other features can be present, in varying degrees from one person to another.
Strangely, the above facts are hardly ever taught in American medical schools, or even in postgraduate specialty courses. The only specialists who claim expertise about EDS are geneticists. They can diagnose EDS and work out what type the patient has, but they generally don’t get involved with treatment. Moreover, there are far too few geneticists, and it can often take a year or even more to get an appointment with one. While there are some doctors in the USA who do indeed care for all aspects of EDS, they are very few indeed and stretched very thin. As with geneticists, they have extremely long waiting lists and very little time to spend with their patients, beyond the first visit.
This is why I began to focus on this condition some years ago. I felt that people with a condition with so many components, should have at least some of their medical treatment from knowledgeable doctors who could help them with all of their symptoms, not just those coming directly from loose joints. I have put together my past experience in general medicine, pain and fatigue treatment, with all I have learned, and continue to learn, from the national EDS experts. I hope I can thus offer my patients the knowledgeable and wide-ranging help they deserve, for a condition that the medical system as a whole largely ignores. – Alan Spanos, MD, MA.