Updated: Sep 17, 2022
In the past, those with Ehlers Danlos-Syndrome (EDS) claimed that their disorder is the 'Most neglected disorder in modern medicine'. That was maybe true until they received a major classification update and major genetic research has started for this disorder in the last 2 years.
This new title now surely belongs to the condition Clubfoot or the medical term called Congenital Talipes Equinovarus or C.T.E.V. Interestingly enough many patients with clubfoot may also have EDS as an underlying disorder but this is not applicable to all clubfoot patients. In fact, based on research by the Clubfoot Research Foundation there is a large number of underlying conditions that complicates the treatment of this disorder and some are significantly different in nature to others.
Why would we say though that this disorder is next in line for this title? For the Research Foundation It may have something to do with the fact that this congenital birth defect affects more babies than any other condition on earth. It is the largest disorder in numbers and affects way more people than Cancer, Diabetes or any other permanent disability! The problem is that it is so 'unknown' to many!
This condition is also not so clear cut or easy to treat as doctors claimed and estimated in the past. For many years a 'cure' was advertised which many people even Orthopedic doctors believed. It turns out that this was not the case at all. Research for this condition has suffered from a lack of coordination and clinical care for these patients have been compromised because clinicians are not familiar with the wide range of manifestations and co-morbidities that accompanies clubfoot. The Clubfoot Research Foundation has worked hard the past 6 and a half years to educate the healthcare and patient communities and to promote greater understanding of Congenital Talipes Equinovarus/Clubfoot.
Patients are still struggling to find appropriate treatments and to find a physician who understands the guises that influence successful treatments is difficult. The patient group suffers many different manifestations that may seem unrelated to what other patients experience. In this regard the Clubfoot Research Forum and Foundation played an important role in the last 7 years. The group started to collect feedback and outcomes and symptom reports which they then reported back to key medical professionals who are leaders in the industry regarding the research they do. This has sparked a new interest in some researchers to revisit past assumptions about the condition and to look into new research projects that can contribute significantly to new knowledge about this condition. Currently it is a fact that geography and specialty determines your quality of life, as treatment outcomes are different all across the world. It is even difficult to find knowledgeable clinicians in first world countries such as the United States as not all states have equivalent skills or expert trained physicians for this condition.
The Clubfoot Research Forum and Foundation is a global community of patients, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by Clubfoot or Congenital Talipes Equinovarus and its other major co-morbidities such as Spina Bifida, Tethered Spinal Cord Syndrome, Arthrogryposis, Ehlers-Danlos syndromes and many more related disorders. It is a 501(c)(3) nonprofit organization.