The primary mission of this site is to support strabismus patients. As a former strabismus patient myself, I know how lonely it can be. When I was first diagnosed, I looked around for help but could find little beyond my clinic appointments. My clinical team, led by Prof. Jain, were excellent, the orthoptists, nurses. and the admin staff, but there was no psycho-social support available. Other strabismus patients report a similar experience.
I certainly suffered psychologically, for example, I became very anxious when walking in the street. Stairs became visually confusing, due to the diplopia (double vision) making me fearful of falling. Other areas of my life were impacted in terms of my ability to work, especially computer-based work. My interactions with other people were difficult at times. Also, the lack of general awareness of strabismus – few people knew its medical name, and the less formal title of a squint added to the confusion and trivialisation of the condition – meant that even loved ones were slightly dismissive of what I was going through. It was a very lonely period.
In Phase One of this site, the main focus of our attention will be on the psycho-social impact of strabismus. The clinical care of patients who have been diagnosed with strabismus will, of course, be managed by their medical team. If you have already been diagnosed with strabismus and are under the care of a specialist clinic, you should, in the first instance, address any concerns you have to your clinical team. Not every patient with strabismus will have the same symptoms, nor will the cause of their strabismus be the same – mine was the result of my high myopia and came on in adulthood. Your diagnosis might have a different cause, such as trauma, or a stroke. For some adults, their strabismus began in childhood and has continued into their adult life. As I’ve stated already, strabismus is a complex condition.
Whilst it is relatively easy to find information on strabismus, you may be confused by the fact that it is also referred to as a squint. If you search for information on what is a squint, you may well find further information on that. However, there is almost no easily accessible information related to the psychological suffering that can come with having strabismus. Where there is information, there appears to be a bias towards information related to babies and children, which is, in my opinion, perplexing and unhelpful to adults. This needs to change.
There is also a general lack of recognition that strabismus can impact social areas of life such as work, social mobility and relationships. There is certainly some excellent research available, but it’s not widely publicised, not easy to find. I hope that we can, through this site begin to do something about that. I am putting together a page which will be an online library of links to various papers, publications and documents related to strabismus and this will be available soon. Please feel free to contact me if you would like your research paper added to our library.
Another key aim of this website is to raise awareness of strabismus. Prof Jain, Dr Riva and I are all committed to increasing understanding of strabismus which will, in turn, help to improve care for patients.
I am currently working on this site unfunded but hope that sponsorship and donations to support the long-term maintenance and development of this site, and also the campaigns I would like to conduct on behalf of strabismus patients, will be forthcoming in the future.
There are also things that you could do, if you feel able to, to help with raising awareness of strabismus. I’ll be posting more about this soon as this site develops so please come back again soon.
I have spoken to other people with strabismus who find themselves quite isolated and alone in dealing day to day with this little-known eye condition. We hope that the existence of this site will go some way to ease your sense of isolation. You are not alone.