Robert Grun and his wife were expecting twins. Robert was in his mid-20s working as a compliance officer on mergers, acquisitions, and insider trading in a Wall Street firm in the Twin Towers. He worked all the time, but he was looking forward to starting a family.
Three months after his boys were born, he began having trouble walking up and down stairs and getting up from the couch. He tried to ignore it, but it kept getting worse. After months of visiting doctors, he was diagnosed with dermatomyositis. He was struggling with his disease and the demands of twins and his job, and after surviving September 11th, he went out on permanent disability because of myositis.
Robert stayed home to take care of the twins, who are now about the same age he was when he was diagnosed. “I was so glad to find The Myositis Association (TMA). TMA gave me information about myositis research and clinical trials, evidenced-based information, and coping tips.”
It was challenging to care for his sons and manage his disease, but he found support through online conversations with TMA members. “I even had conversations with pharmaceutical companies who wanted to speak with patients as they developed new therapies.”
TMA helped Robert navigate medications, learn about research, connect with resources, and make peace with his quality of life. “I am so grateful for the information and guidance TMA has given me over the years.”
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Thanks for sharing your story with others Robert. Wishing you all the best and it is such a blessing to raise your boys and see them grow into great young adults.