Eduardo has been through a great deal of hardship due to VCP disease. This condition affects the muscles and causes weakness, which can make everyday activities challenging. Eduardo's journey with VCP disease has been one of resilience and perseverance. He has faced many obstacles, including the emotional toll of living with a chronic illness. Despite his challenges, Eduardo has maintained a positive attitude and has become an advocate for others with VCP disease. Eduardo shares his experiences, the impact the disease has had on his life, and his determination to overcome its challenges below.
Hello, my name is Eduardo...
I'm 61 years old and I have VCP disease. I live in São Paulo, Brazil with my wife and daughter. My experience with VCP disease began in 1972 when my uncle (my father's older brother) started to have difficulty walking and climbing stairs.
At that time, nobody knew what was wrong with him. My uncle’s illness grew worse and he became bedridden. He remained in bed for several years before he passed away. Around 1976, my father started to develop the same symptoms as his older brother. He became worried and started looking for doctors to help.
My father and uncle were vaguely diagnosed with muscle inflammation. No treatments or cures were offered and they died without being properly diagnosed.
In 2004, my older brother was told he had inclusion body myositis... He suffered similar ailments to our uncle and father. He also developed Frontotemporal Dementia (FTD). Like our Uncle, my brother was bedridden for many years prior to his death in January 2022.
In 2011, I had difficulty walking, and climbing stairs... I frequently fell. I underwent a biopsy and an electroneuromyography. Myositis and inclusion bodies were found. My sister, now 57, was diagnosed in 2017 with Inclusion Body Myopathy (IBM). She also has Frontotemporal Dementia (FTD). It's a pity this disease victimizes our family in such a brutal way. Our family has suffered great losses and it continues. It is a tragedy.
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I began looking for alternative treatments to help me with my muscle weakness when I met Dr. Kimonis through clinicaltrials.org. It is through her that I met my friends and VCP family at the Cure VCP disease organization. I am very proud and pleased to be part of this entity. Partnering with the organization as a patient, advocate, participant, and donor has become a very important part of my life. I am especially grateful to its founders, Nathan and Allison Peck who help people impacted by VCP disease share their experiences. They encourage the study of the disease and motivate those who have VCP disease to achieve a better quality of life.
My family and I attended the patient conference in St. Louis, Missouri in the summer of 2022... It was an extraordinary experience. We were able to meet other patients who have VCP disease, including several doctors who collaborate with the organization. Talking about the disease can be difficult, but it relieves stress and gives us the strength to keep fighting. My family and I are thankful for the time we shared together with other patients and their family members at the conference. We've established strong bonds of friendship and solidarity. Thank God, I can say that I have the support of my family, wife, daughter, and friends who also care about others and want to help them live well despite our difficulties and physical limitations.
We must continue to work together and fight to have better lives... I try to share my story with others as often as possible. I do this to pass on knowledge of the disease and to provide others with support and hope while we work together to find treatments and cures. Due to the extent of my disease, I no longer work as the Controllership Director of an American company, Fidelity. I appreciate their continued support of me and miss the daily activity of working and making a professional contribution.
But, I am still here! I am alive! I have a purpose! I go twice a week to physical therapy and gymnastics under the instruction of a personal trainer. My disease continues to evolve. There is no way to avoid it. The exercise slows down its evolution. I am dedicated and determined to find treatments and a cure. I am here to help people fight the disease, clarify their doubts, and share my experiences through online meetings (webinars and Happy Hours) and attend conferences as long as I can.
I ask you to join us and partner with the VCP Disease organization.
Please make a generous contribution so that we can move research forward to help alleviate suffering, find treatments, and a CURE for VCP diseases.
Respectfully, your friend,
Proud Brazilian, Caring Brother, Devoted Husband, Loving Father, Loyal Friend, Retired Professional, Hard-working Volunteer, and Compassionate VCP Patient.
We are a patient advocacy organization driving efforts to discover a cure for neurodegenerative diseases associated with VCP including IBMPFD, dementia, Parkinson's, CMT, and ALS. We encourage patients and doctors to connect with us. We are committed to collaborating on research and advocacy initiatives and helping patients and their families.