The Superficial Siderosis charity

​The Beginning of My SS Journey: What Led to the Diagnosis?

​

In the early days, the symptoms that would eventually lead to my diagnosis seemed to appear slowly, almost imperceptibly. At first, I noticed a slight decrease in my hearing. Conversations that had once been crystal clear became muffled, and I began to struggle to hear people in crowded rooms. Then came the balance issues. I would feel unsteady when walking, especially on uneven surfaces, and started to have difficulty climbing stairs. Finally, there was the mobility loss—every day, it felt like it took more effort to move around, as if my body were growing heavier.

These symptoms weren’t severe at first, but over time, they worsened. I started to experience fatigue, muscle weakness, and discomfort in my joints, which began to interfere with my ability to function at work and at home. After numerous appointments, tests, and consultations with various doctors, I received a diagnosis that would change my life forever: SS.

​

What Were the Symptoms That Led to the Diagnosis?

​

The symptoms that led to my diagnosis were both physical and increasingly debilitating. They included:

​

- **Hearing loss**: The gradual decline in my ability to hear, particularly in noisy environments, made me realize something wasn’t right.

- **Balance loss**: I began to feel more unstable, with difficulty staying steady on my feet and a general sense of dizziness.
- **Mobility problems**: Moving, even short distances, became increasingly taxing. It was as though my muscles and joints no longer responded the way they used to.

​

It was these persistent symptoms, which only seemed to worsen, that prompted me to seek medical advice. The journey from initial concern to diagnosis was not immediate, though.  

 

Appointments and Tests: A Long Road to Diagnosis

​

My journey to finding a diagnosis involved countless appointments with specialists, a series of MRIs, and various tests. Unfortunately, many doctors in my area (Paris, TX and surrounding areas) were unfamiliar with SS, which made finding an accurate diagnosis particularly challenging.

One of the most frustrating aspects of this journey was the lack of clarity from my healthcare providers. Many tests came back inconclusive, and it wasn’t until I was referred to specialists further afield that the pieces started to fall into place. Dr. Levy, a renowned expert based in Boston, became an invaluable resource, answering questions my husband and I had about this rare condition.

​

In addition to the consultations, there were numerous medical tests—blood tests, MRIs, and nerve function evaluations—that eventually confirmed the diagnosis. While I felt relief in having a name for what was happening to me, the truth was that SS, a rare autoimmune disorder, is little understood even by doctors, which made it difficult to know what to expect next.

 

Coping with SS: Adjusting to a New Reality

​

One of the most difficult aspects of living with SS has been adjusting to a new way of life. The symptoms were not just physical, but emotional and psychological, and learning to cope with them has been a daily struggle.

 

Early Retirement

The physical challenges of SS made it clear that continuing in my career was no longer sustainable. I made the difficult decision to sell my half of the pharmacy I co-owned with a business partner, as I could no longer commit to the demanding hours of running a business. However, I retained my share in a real estate company, as it required far less daily involvement and allowed for more flexibility.

​

Medical Treatment: Cochlear Implant and Physical Therapy

In terms of treatment, my journey has involved several interventions, including the installation of a cochlear implant to address my hearing loss. The procedure was a turning point, providing me with improved hearing and a greater sense of connection with the world around me. 

Physical therapy has also been crucial in my recovery. I worked with a personal trainer, Tania, who tailored a routine specifically for my condition. Regular exercise, including treadmill walking and cycling, has helped to improve my mobility and maintain some degree of strength.

​

Supplements and Medications

Dr. Levy recommended a regimen of supplements, including IP6 and Vitamin C, to help manage the symptoms of SS. These supplements, combined with prescription medications, have provided some relief, although they don’t cure the condition. It’s been an ongoing trial-and-error process, trying to find what works best for my body.

 

The Most Effective Activities: What’s Helped the Most?

​

Living with SS means that I’ve had to find ways to adapt my daily activities to manage my symptoms and maintain some level of function. The most useful, effective, and important activities for me have been:

- **Exercise**: Regular exercise is vital for maintaining mobility and overall health. I use the treadmill and cycle regularly, both of which help me stay active without overstraining myself. 
- **Physical Training**: Working with my personal trainer, Tania, has been incredibly helpful. She has helped me develop a physical therapy routine that focuses on strengthening my core and improving my balance.  
- **Vestibular Exercises**: I perform vestibular exercises three times daily to improve my balance and reduce dizziness, which has been one of the most debilitating symptoms of SS for me.
 
The Importance of Emotional and Practical Support

​

One of the hardest things about dealing with a rare condition like SS is the isolation that can come with it. In addition to managing the physical aspects of the condition, there’s the emotional burden of living with an illness that few people understand. The support of my family and loved ones has been a lifeline for me.

- **Family Support**: My parents have been instrumental in helping me attend medical appointments, traveling with me to various specialists. Their support has been unwavering, and it’s been a great comfort to have them by my side.
- **My Husband’s Role**: My husband has taken on a significant role in my care, not just by helping with medical needs, but also by taking over many of the household responsibilities that I can no longer manage. His patience, understanding, and dedication have made this journey far easier than it would have been without him.
 
At home, we've had to hire help for household tasks like cleaning and meal preparation, as these activities have become too exhausting for me. Having this support system in place has allowed me to focus on my health and recovery.

 

Goals for the Future

​

As of November 2024, my goal is to maintain and improve my mobility. Although I currently rely on a walker for day-to-day movement, I am committed to doing everything I can to continue improving. Physical therapy, exercise, and continued medical treatment will remain at the core of my approach to managing SS.

Every day is different, but my focus remains on adapting to my new reality, staying as active as possible, and taking care of both my body and mind.

 

Conclusion

​

Living with SS has been a challenging journey, but it has also taught me a great deal about resilience, patience, and the importance of support. While the path to diagnosis was long and often uncertain, I am grateful for the resources, medical professionals, and loved ones who have helped me along the way. I share my story in the hopes that it will bring comfort to others navigating similar struggles, and to raise awareness about this rare, often misunderstood condition.