Following a very stressful time in her life, Jan Nitti was 38 years old when she was formally diagnosed with Raynaud’s by her primary care physician who also conducted an ANA blood test which came back positive. Rather than attempt to determine if a serious autoimmune disorder was involved, his attitude was quite dismissive, telling her to quit smoking and it would go away. After she quit smoking for three months, her symptoms continued to get worse, so Jan decided to see a rheumatologist on her own who diagnosed her with Raynaud’s secondary to scleroderma as her primary ailment.
After her diagnosis, Jan turned to the Internet and consulted with healthcare professionals she worked with as an executive in the medical profession, including pharmacists, nurses, and PhD scientists, for more information on Raynaud’s. She found that her symptoms created career challenges, especially when presenting to high-level professionals in the hospital setting. Even though she took steps to dress warmly, her hands became difficult to use during these presentations which involved using her hands to demonstrate products for point of care testing at the patient’s bedside.
Beyond work, Raynaud’s has also impacted Jan’s everyday life, limiting her ability to engage in outdoor activities in cold weather. Even taking a shower or being in a cold store triggers attacks. To prevent flare-ups, Jan always carries warming products with her, has multiple portable heaters in her home in areas where she spends more time, closes off her the air conditioning vents in her Florida home and uses a heating pad on her lap. Jan travels with a portable tabletop heater when she’s away for a few days and brings her heating pad along on visits with friends and family. She also takes medications like amlodipine, sildenafil, duloxetine, and clonazepam to manage her Raynaud’s and her stress levels which also can trigger attacks.
Having Raynaud’s has been extremely challenging for Jan. She suffers with severe digital ulcers resulting in the loss of one digit. Her ulcers can take months to heal and are so painful and severe that it’s become difficult to use her hands and walk as she keeps them bandaged and cushioned at all times to avoid further trauma.
In order to manage her Raynaud’s episodes, she maintains a journal on the frequency of her attacks to share with her physician. She’s also engineered tools to assist her in drinking, eating and other daily activities that involve contact with cold items and challenge her dexterity hampered by digital ulcers. These tools have played a key role in helping Jan regain some of her independence and maintain a better quality of life.
Despite the challenges, Jan maintains a positive outlook by focusing on finding solutions, adapting her lifestyle, and educating herself about her condition. She’s also taken proactive steps to help others suffering from Raynaud’s and related ailments, including:
- Developing a medical workbook for scleroderma patients called “Be Your Best Advocate – A Workbook for Improving Your Life with Scleroderma.”
- Volunteering with the Scleroderma Foundation for over 20 years as a support group leader and conducted the first vendor expo for the Tri-State area and first webinar support group.
- Participated in several clinical trials for Raynaud’s and digital ulcers, along with focus groups for scleroderma patients and is still involved in research to help discover new treatments.
- Recently launched a website www.your-self-care.com to help others find ways to remain independent in daily living activities and features products that have helped improve her quality of life.
- Serves as a Board member and Patient Engagement Lead with the Raynaud’s Association which gives her the opportunity to learn new information and help educate others on Raynaud’s and how to live a warmer more comfortable life.
In addition to her faith, Jan Nitti credits her support system for helping her stay positive. She’s found purpose in helping others and continues to persevere in the face of her physical and emotional challenges. Jan’s journey as a Raynaud’s warrior exemplifies strength, resilience, and a commitment to helping others navigate their own challenges with the condition.
Profiles like this one from Jan Nitti are part of our Raynaud’s Warrior series. If you think your story has warrior potential, we’d like to hear from you, as your approach to dealing with the daily challenges from cold and stress can be an inspiration to millions of Raynaud’s sufferers. To send us your story for possible publication, please share it on our Tell Us About You Form.
