Opera Mariposa gives the gift of music + awareness while raising over $13,000 for the Complex Chronic Diseases Program

September 12, 2014
Not only has Opera Mariposa given the gift of music, but they're raising awareness and funds for this unique program.

Cheryl Davies, Vice President, Patient Care Services with Jacqueline Ko, Founder, Opera Mariposa, Jill Pascoe, Program Manager and Edwina Houlihan, Director Patient Care Services

Opera Mariposa was founded by sisters Stephanie and Jacqueline Ko (pictured below) who have not let Chronic Fatigue Syndrome get in the way of them realizing their dreams.

Stephanie and Jacqueline know what it means to triumph over adversity. At ages 24 and 22 respectively, they are co-founders of their own arts company, Opera Mariposa. But even more astonishing is the fact that they have achieved their dream despite living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a complex neurological disease with a vast range of debilitating effects.
“It’s hard to explain ME/CFS,” admits Stephanie, Opera Mariposa’s communications director. “But I can tell you that it affects every aspect of your life.”

Complex disorder

When you look at the symptoms of ME/CFS, it’s not hard to understand why it is so debilitating. Symptoms include physical and mental exhaustion, sleep dysfunction, pain, poor concentration, hypersensitivity to light or sound, impaired regulation of body temperature and recurrent flu-like symptoms. Then there’s post-exertion malaise, the prolonged loss of physical and mental stamina following even routine tasks – effects the sisters know all too well.

Stephanie and Jacqueline started exhibiting symptoms of ME/CFS when they were eight and six respectively, but it took years to get an official diagnosis. The illness took such a toll that neither could complete high school.
Joy in music

Despite the obstacles, Jacqueline started pursuing her love of singing when she was in elementary school – a passion that ultimately led her to become an award-winning opera singer. Interestingly, it was ME/CFS, together with Jacqueline’s love of singing, that inspired the sisters to establish Opera Mariposa. They knew that by building their own company, they could create rehearsal and performance schedules that would suit their unique health needs while allowing them to pursue their dreams.

Grateful for their own success, Jacqueline and Stephanie have used their music to help raise awareness and funds for ME/CFS. 

Thank you Jaqueline and Stephanie for generously giving your time and energy to give this incredible donation to support the Complex Chronic Diseases Clinic.  

Comments
John Gabor(3 years ago)
THis is great news. As a person who is ill with Myalgic Encephalomyelitis (ME) I am greatful to Opera Mariposa for their kind donation of time and talent. I am hoping the funds raised will be well used for the treatment and research of Myalgic Encephalomyelitis.

I have one issue with this otherwise good news article. I wish the authors would drop the term CFS. CFS is not a disease. It most certainly is not ME. It is a syndrome. I had this discussion with my infectious disease specialist and provided him a collection of professional studies and medical writings to help him understand why the term CFS is so harmful to ME patients and to the advancement of research on the epindimiology of ME. Too many people including doctors do not take 'syndromes' seriously. It is just like AIDS is just a syndrome too until you add HIV to its name. ME is a real disease who epidemiology is better understood than most medical professionals realize. It is not just the Yuppy Flu. Sure, we don't understand everything about it - just like we do not understand everything about MS. However, we do not call MS or even FM a syndrome.

Please everyone, let's stop referring to ME and CFS as the same thing or just calling this illness CFS. Thank you.

Holly(3 years ago)
Hello John, thank you for your comments and support. It's donors like Opera Mariposa that are helping us to provide better care and find new treatment opportunities for Myalgic Encephalomyelitis (ME).

We appreciate your concerns about the use of the term Chronic Fatigue Syndrome (CFS) in conjunction with Myalgic Encephalomyelitis. The Complex Chronic Disease Program at BC Women’s uses the term ME/CFS since the majority of patients, and especially health care providers do not yet understand the ME terminology. The Program does not want this lack of awareness especially in the medical community to pose another barrier to treatment for individuals seeking care for Myalgic Encephalomyelitis. Over time, the CCDP will address this gap in awareness through outreach education of both patients and healthcare providers.

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