THE COMPLEXITY OF CTEV EXPLAINED
Clubfoot or Congenital Talipes Equinovarus (CTEV, a.k.a. Clubfoot) is a genetic or acquired birth defect that can be mild to severe and pain levels range from zero/little to very severe, depending on the type of CTEV, the severity, the outcomes of past treatments, the role and severity of co-morbid disorders, and the timing of genetic expressions over the lifetime of a patient. It affects one or both feet and other underlying conditions may present initially or later, even in adulthood. Known co-morbid disorders include disorders such as Spina Bifida, Larsen Syndrome, Arthrogryposis, Tethered Spinal Cord, Pierre Robin Syndrome, Skeletal Dysplasia and more recently Ehlers Danlos Syndrome were evidenced in scientific publications (Sheth, Shirley & Kay:2021, Byers:2019). The causes are therefore multi-factorial and varied both genetically and environmentally. Food and diet interventions, although recommendable healthy choices does not prevent the presentation of all types of CTEV. Not all of the presentations can be predicted as it includes combinations of recessive genes or spontaneous mutations a.k.a. De Novo presentations.
Since there are varied causes, it is unlikely that one treatment will be effective for all types of CTEV. The CRF.org polls on social media increased the co-morbid scope in CTEV since 2013 and there are many that should still be captured in scientific literature. However the list has influenced the scope of scientific publications since 2013 and we witnessed a renewed interest to research CTEV and we discover new publications yearly, that is changing insights and the understanding of CTEV. The largest research gaps have been passed on to researchers, universities, and physicians the past 10 years and it has yielded witnessable rigor in medical journals and new research topics targeted by researchers.
However, there are some educational challenges to overcome in order to educate about CTEV fully. Our work of improving the education and research in this arena are not completed yet. More funding will greatly help us in this regard! The CRF.Org stands on the shoulders of the giants that came before us though. Adult patients living with CTEV started literature analysis in 1980 and in particular the work of Notty Bumbo, a Pedorthist in California, influenced the CRF.Org! The patients we represent include veterans, teachers, doctors, nurses, cashiers, programmers, and many other patients from all walks of life across the globe. All nations are touched by this birth disorder globally which is why the CRF.Org has many country and state support groups on social media.
In recent years we helped PHD students at various universities that are designing new products, or investigating why unilateral CTEV presents versus bilateral. We introduced the first physician specialist lists in our regional groups in this arena, to support our patients with more appropriate therapy access points when they encounter unexpected complexities. This list will be made available in our member section in the future.
In 2017 the Foundation released its first educational slideshow at a Physician managed mini conference. Then in 2022 we submitted our first conference publication to a large government managed conference. In this proposal we revealed the unique genetic educational challenges CTEV presents through meetings and in the proposal and it resulted in immediate action by the government to help us educate further about CTEV. We were then invited to participate in a series of genomic discussions about the past, the present and the future of genetics.
Genetic testing education is crucial for CTEV patients and the CRF.Org has been providing this education to patients since 2013. How will this help your family? The detail revealed by genetic testing influence what kind of therapies a patient should source. In the CTEV co-morbid arena genetic therapies are already in use and there are risks that CTEV patients should be aware of but the education of such impacts have been neglected.
In the absence of more detailed testing, appropriate decisions cannot be made by patients or caretakers timeously. Some therapies are more successful if administered at a younger age, and may slow down the progression of a co-morbidity that may cause a relapse of CTEV. Those who have been diagnosed with Idiopathic CTEV should also be made aware that the Idiopathic cohort has been shrinking with more recent genetic findings the past seven years. This will continue to occur and more syndrome recognition will increase as more detailed testing occurs in future.
Each CTEV patient deserves access to appropriate detailed genetic testing to identify the different and varied genetic role-players warranted because CTEV is a varied complex multi-systemic disorder that not only influences the foot but also other body areas and systems lifelong. Outcomes between the different types of CTEV are not comparable unfortunately. If you need testing information we have educational information for you regarding testing that has helped many patients source appropriate therapies. Please donate to the CRF.Org so that we can make testing more affordable for patients also in the future.
Literature discussions, perspective analysis, testing education is available in our social media groups dating back 10 years. If you wish to ask more questions or need more specific information, you are welcome to send an email to firstname.lastname@example.org or message us through our social media groups for more detailed discussion.