So many blepharospasm patients feel isolated and alone; they often think that no one understands what they are going through. BEBRF decided to share Patient Stories so that those patients would see that they are not alone. These stories vary widely, just like blepharospasm and blepharospasm patients.
*We also have a limited supply of the book Patient Stories Vol. 2 in our store if you are interested in that.
Feel free to share your story as well.
My Blepharospasm Journey
By Area Representative, Helene Lauffer
In the Beginning
In the beginning, I noticed only that my eyes felt “weird”, kind of irritated. I saw my ophthalmologist twice in a few months, but he had no explanation and referred me to a cornea specialist who diagnosed me with Blepharitis and put me on a regimen of drops. Then the light sensitivity and constant blinking started, and it went downhill from there.
The Search for a Diagnosis
I live in New York City, probably the medical capital of the United States. I used my education, persistence, networking skills, and savvy to search out the best eye specialists at the most renowned medical institutions our city has to offer. None of them had a clue as to why I felt compelled to close my eyes constantly and why I could barely keep them open at all outside. I stopped driving. I felt uncomfortable during meetings at work and often asked to hold meetings in darkened rooms. I found navigating the streets and subways in order to get to and from work extremely challenging, as I was stopping and starting, constantly bumping into people, and occasionally falling. I was scared, feeling increasingly self-conscious, and unnerved that no one in the medical establishment could help me understand what was happening to me. Even my internet searches, which logically focused on conditions of the eyes, came up empty.
Getting a Diagnosis in an Unlikely Place
About a year after I started experiencing my symptoms and seeking medical care, I traveled with my family on our annual trip to see my husband’s parents and siblings in the beautiful Himalayan state of Kashmir, in India. I was extremely uncomfortable by this point, unable to keep my eyes open in most social situations. My extended family could see my struggle and was very concerned. They recommended that I be seen by a hakeem: a doctor trained in the Unani system of medicine, which originated in ancient Greece and evolved in Persian and Arabic societies, and which relies on herbal and other homeopathic remedies. Since I had had no luck with all the other physicians I had consulted in New York, I figured I had nothing to lose.
The visit with the hakeem, Dr. Mohammad Yousuf Dinthoo, who practices with his senior medical partner Dr. Naseer Ahmad Shah, changed the course of my life. It was actually a very short meeting, during which he asked me to describe my symptoms and I answered in a sentence or two. Immediately, he said, “that sounds like Blepharospasm”, a term that, up until then, I had never heard. His homeopathic remedies did not actually prove helpful, but when I looked up “blepharospasm” on the computer after the visit, I realized it was exactly what I was experiencing. Strange that I had to go halfway around the world to get a diagnosis! In truth, I did feel like many of the doctors I saw in New York City were so rushed that they could not take the time to fully explore what I was telling them. Also, as is typical with eye doctors, they were usually examining me in a darkened room, where my symptoms were less noticeable. In effect, they were looking at me but not really listening to me. Dr. Dinthoo, meeting me in a no-frills office in a developing country, focused on what I was saying and brought his medical training to bear.
Trial and Error with Treatment
As is typical with many Blepharospasm patients, it took a long time for me to find the doctor who had the right approach for me in terms of injecting botulism toxin. In fact, my third doctor was the charm, and he has given me my life back after several years of struggling with constant blinking as well as apraxia of eyelid opening (spasms that cause the eyes to shut and then delay opening). I am delighted to say that I am now working full-time (managing part of a human services agency providing housing to the chronically mentally ill as well as domestic violence victims), walking, running, bicycling, and driving (but not at night, as the glare from oncoming traffic is difficult for me to tolerate.) My eyes are often irritated, and they certainly get fatigued, but most of the time it is background noise, and not my main focus. For me, getting injections from a doctor who listens, takes time to observe my symptoms, and is skilled and caring, has been life-changing.
The New York State Commission for the Blind
Before I was diagnosed with Blepharospasm, while I was struggling to manage my symptoms and live my life, a kind colleague at Catholic Charities (where I was working at the time) referred me to the Catholic Guild for the Blind. The Guild is one of several not-for-profits funded by the New York State Commission for the Blind to provide mobility and rehabilitation services to people with vision loss. With support from the Guild, I became the first person in New York State to be authorized for these services due to a diagnosis of Blepharospasm. Following that authorization, I was provided with counseling, mobility training (on the use of a white support cane to help me navigate while walking out in the world), assessment of my home environment for tripping hazards and the like, a technology consultation to teach me about the accessibility features of my smartphone as well as options for use of the computer, access to paratransit, and other support services. While I no longer need most of these supports, at the time they were extremely useful and allowed me to manage my home and work life with less risk and less stress. The Commission also provided professional facilitation to the New York City BEBRF support group, which has been a wonderful addition to the services we have been able to offer.
What the BEBRF Support Network Means to Me
The period after my diagnosis, but before I had been successfully treated, was very difficult for me. My symptoms were severe, I could barely get from point A to point B, and I was trying to keep up with my professional and parenting responsibilities. I did not know if the botulism toxin injections would work for me, and I felt scared and overwhelmed. When I connected to the BEBRF online, and eventually spoke to both LeeAnn DeBerry, the New York City support group director at the time, and Barbara Benton, the district director, it was a revelation: people who understood what I was going through! It was the fall, and no New York City support group was planned until the spring, so Barbara suggested I go to the upcoming support group in New Jersey. Even more amazing was the kindness and encouragement I felt from each and every member of that New Jersey group, all of whom took time to listen to my story and reassure me that my situation would improve with the right treatment. For the first time in a long while, I felt hopeful.
Fast forward about six years, and I have been running the New York City support group (now meeting twice per year) and appreciating the energy, resilience, and sense of community that the group provides to Blepharospasm patients and their family members in New York City, Long Island, New Jersey, and Westchester and Rockland counties. At most meetings, there are one or two new patients who are visibly uncomfortable, struggling just as I was before I got into the groove of effective injections. It reminds me how far I have come, and how grateful I am to the many people who have supported me (and who continue to support me) through this journey.
Note: The BEBRF offers many support group meetings in person and now online. Please contact us if you are interested in attending. We are also always looking for Support Group Leaders around the country and we offer support and training to minimize the workload for a leader.