The story of Rowena
In 2004 while undergoing marital and financial challenges, I decided to seek employment abroad. Although it broke my heart to leave my three young children, I had to make that difficult decision and eventually flew to Riyadh to work as a dental assistant. The offer of good compensation and regular annual vacation made this predicament easier to endure.
It was during winter in December 2005 when I began to notice something unusual – my fingers turn blue whenever they come in contact with cold water. The recurrence of this symptom along with lingering stomach issues urged me to seek medical advice. The GP doctor thought that the bluish finger phenomenon might be an onset of an underlying heart condition and referred me to a cardiologist for further observation. At the same time, I was promptly directed to a gastroenterologist for the stomach problems.
After two months of medical investigation, the cardiologist officially diagnosed me with Scleroderma. The obscurity of the condition together with the possibility of incapacity and even death deeply troubled me. I feared the thought of leaving my children unsupported and orphaned at such a young age. Furthermore, living alone in a distant country with this condition brought mental anxiety in addition to the physiological symptoms I was already experiencing.
On the bright side, working in a medical facility gave me free access to medical specialists and medications, as compared to the unaffordable healthcare system available back home. Indeed, it was something to be thankful and hopeful for.
Continued research about the condition brought my attention towards the Scleroderma Foundation. This gave me the opportunity to interact and participate in their activities which culminated in my attendance as a patient-delegate to the 2010 National Patient Education Conference in Boston, Massachusetts, USA. This experience inspired me to initiate and organize a similar group in my home country.
I returned home with the ardent desire to put my learnings and ideas into immediate action but financial constraints pushed me to seek overseas employment for a second time. This time, I was fortunate to work in a government health institution. This employment came with good privileges such as free access to consultations, diagnostic procedures and medicines. My case was even studied and discussed in a series of multidisciplinary meetings between top specialists in various medical specialties – Pulmonology, Radiology, Pathology and Rheumatology.
On October 2018, after almost three years of regular check-ups, strict compliance with doctors’ orders and lifestyle modification, I was informed to be in medical remission.
After fifteen years of working abroad, I decided to finally go home and focus on my advocacy towards raising Scleroderma awareness.
I started to devote time in being actively involved in various Scleroderma-related activities such as maximizing the use of social media in raising awareness, providing support to other diagnosed patients and participating in events organized by similar auto-immune disease groups.
Personally, I view my journey as a successful one. I still might have the disease, but my experiences gave me hope and optimism. In front of a large group or in a private conversation with a friend, I always proudly share my story and positive outlook in battling the disorder. As my personal belief goes, “All for Scleroderma”.