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| I am a husband. I am a social advocate. |
| Adam has struggled with a vocal disorder since a young child. At age 13, becoming more aware of kids teasing, Adam saw therapists, psychiatrists, speech therapists and even a hypnotist — who all thought it was in his head, he was finally diagnosed with spasmodic dysphonia. After unfavorable Botox treatments, Adam opted for SLAD-R surgery; however, with one year of relief, the symptoms of SD returned. Adam is now 12 years removed from surgery and has returned to Botox and speech therapy. Adam says he has good days and bad, but tries to concentrate on the positives in life. Adam started the SD group on Facebook, which now has over 1300 members! |
| “My manager once said to me, ‘In the absence of a leader, be a leader!’ This inspired me to know that I can lead even though I have vocal limitations.” |
| Facebook Group: Spasmodic Dysphonia |
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| I am a reader. I am a granddaughter. |
| Elisa is 12 years old. She has only known her grandma with a vocal disorder. She has never heard her grandma’s true voice. Elisa believes it is important to increase awareness so that people with the disability will not be ashamed. She believes everyone has something that makes them different. It is what makes us all special. So, it is important to love yourself and have fun no matter what. |
| “One day you will wake up & there won’t be any more time to do the things you’ve always wanted. Do it now.” – Paulo Coelho |
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| I am a designer. I am a member. |
| Ingrid acquired unilateral Vocal Fold Paralysis during thyroid surgery in 2007. After several months of inaudible speech, she had medialization surgery and began working with a speech pathologist. Although she still struggles with speaking, breathing, swallowing, and the occasional laryngeal spasm, she continues to work as a costume designer for film and TV and as a part-time teacher. Ingrid believes the experience of voice loss has made her a more compassionate person, respectful of other people’s struggles. |
| “Never underestimate your own power.” |
New York USA
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| I am teacher. I am a member. |
| Loretta is a 55-year-old teacher. She started experiencing a voice disorder at the age of 36 after her sister passed away. In the early stage of Loretta’s diagnoses, VoiceMatters was a great support system. She is now part of a wonderful local support group, which Andrea Hardaway connected her with. Loretta believes with a positive outlook and a strong support system, we can overcome our obstacles together. Connecting with others that understand makes a difference. |
| “If you can overcome great obstacles, you can achieve GREAT things.” |
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| I am a singer. I am a patient. |
| Margaret sang in amateur and semi-professional choirs since 10 years old. While preparing for retirement in late December 2013, she believes a bad decision was made to sing in a concert while having a serious case of laryngitis. She quickly became dysphonic and was diagnosed with “vocal atrophy”. Following a non-botox injection procedure, improvement followed and Margaret started voice lessons October 2014. Almost one year after the initial incident, she suffered a setback while performing in a concert. Fortunately, Margaret found an ENT who properly diagnosed and treated her. |
| “I am slowly resuming singing lessons and looking forward to resuming what I love most — singing.” |
| New York, NY USA |
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| I am a Mimi. I am an encourager. |
| Belinda has had a vocal disorder for approximately 17 years. She was originally diagnosed with functional dysphonia — brought on by stress. She believes that was her pathway into spasmodic dysphonia. Belinda’s biggest regret is that she allowed her vocal disorder to prevent her from reading to her grandchildren when they were young. Through prayer and faith, Belinda has become more confident with her “new voice”. She is no longer intimidated by social situations. |
“Hope deferred makes the heart sick. I still have HOPE.”
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| Tennessee USA |
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| I am a mother. I am a grandmother. |
| Brenda developed a voice disorder in her early 40’s as part of a neurological condition. Despite her limitations, she works full time encouraging people with ‘different abilities’ to use music and singing as a means to enrich and fulfill their lives. Brenda is a positive and energetic influence in their world, and is passionate about raising awareness about the importance of voice in every aspect of life. |
| “I would love people to be more tuned into their voice and not take it for granted.” |
| Australia |
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| I am a retired Registered Nurse. I am a previous Vocal Cord Dysfunction (VCD) patient. |
| After personally experiencing VCD, Carol wanted to help others to more quickly be fully and accurately diagnosed and gently treated for this frightening, potentially dangerous, and often “multi-factorial” breathing problem (VCD/ Laryngospasm) due to vocal cords closing up (adducting), when they shouldn’t. |
| “Don’t give up! There’s hope and help! Keep asking questions!” |
| Website: Can’t Breathe? Suspect Vocal Cord Dysfunction!” |
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| I am an uber-mom. I am an advocate. |
| After a very long 5+ year journey to getting the proper diagnosis of SD, Deb was grateful to FINALLY know what “IT” was and wanted to spare others (if possible) some of the frustrations she experienced with the “lack of knowledge/understanding” and “thinking they are crazy” because they’re not. |
| “You are not alone – We are a community.” |
| New Hampshire USA |
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| I am a student. I am a clinician. |
| Eve believes that people with voice disorders deserve access to individualized, efficient speech and language therapy, worldwide. She also believes that awareness must be raised within the speech and language therapy profession and within the general public. Wider awareness will lead to more funding for research that could result in new and more efficient treatment options. Increasing awareness of professionals will lead to quicker, more accurate assessment, diagnosis and evidence-based treatment. Increased awareness within the general public will reduce individuals with voice disorders’ day-to-day difficulty of battling to be heard. |
| “Everyone has the right to be heard!” |
| United Kingdom |
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| I am a writer and business owner. I am a speech pathologist. |
| Having been diagnosed with Spasmodic Dysphonia (SD) in 2004, Connie has used her experience of holistic voice recovery to guide others to be free to speak again. Connie has been a Speech Pathologist since 1981; but since 2005, her focus and passion has been on developing a voice rehabilitation program for those suffering with severe dysphonia. Located in the Tampa, FL area, Connie offers private consultations/therapy, intensive voice clinics and web-based consultations. She believes that people suffering from SD need to know about alternatives to botox if that is what they are seeking. |
| “Change begins with the hope that it is possible. People with SD can experience freedom of speech once again.” |
Georgia USA
Business: Free to Speak Voice Therapy |
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| I am a member. I am a contributor. |
| Eric is a freelance graphic designer with a degree in Web Design and New Media from the Academy of Art University in San Francisco. Running his own business in Virginia and working on a graduate degree in health informatics, Eric is also a member and contributor to VoiceMatters and VocalDisorders.org. Realizing and dealing with the challenges those with vocals disorders face everyday, Eric wants to be an advocate for the vocal disorders community. |
| “Be a voice for the voiceless to bring back the voices of the voiceless.” |
Virginia USA
Business: Eric Stamps |
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| I am a discoverer of the wonders of life. I am an instructor/teacher. |
| Jeroen has had ADSD since 2006 and managed to overcome the effects and the cause of his SD. He knows the desperation that goes with it. Currently, Jeroen is gaining more knowledge and experience himself while helping others to understand their voice problem. |
| “Your voice problem isn’t the problem, it is a result.” |
The Netherlands
Link: Spasmodic Dysphonia Help |
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| I am a Health Promotion Professional. I am an Advocate. |
| Louise is a 56-year-old woman, wife and Mum who has worked in healthcare her entire adult life. She developed a life changing dysphonia at age 47; but despite its challenges, it hasn’t slowed her down. Born to talk, Louise refused to be silenced, and has broadened her communication repertoire to express herself through writing and advocating for voice awareness. |
| “I encourage everyone to pause and appreciate the real value of their voice.” |
Sydney Australia
Blog: Lou Bale |
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| I am a minister. I am a psychotherapist. |
| Richard developed Adductor SD slowly and insidiously starting in 1973 when he moved to Sydney, Australia, as a pastor of what became the Uniting Church. By 1985, and back in New Hampshire, he was finally diagnosed with SD at the Lahey Clinic in Burlington, Mass. Richard gave up preaching and became a psychotherapist until he retired last year at age 70. Botox worked well for him since 1989; and in 2014, he had SLAD-R surgery which has given him a new lease on life. |
| “I love Voice Matters support and chats!” |
Sandwich, NH USA
BLOG: Surgery with SD
Facebook Group: SLAD-R Folk |
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| I am a friend. I am an overcomer. |
| Being diagnosed in 2013 with Abductor Spasmodic Dysphonia, Dortha spent some time really feeling confused and unsure about where to turn. Once she began tapping into resources and support groups, she gained understanding of who she is as a person. She learned that her vocal disorder does not define her. Dortha wrote a book in 2014 and dedicated an entire chapter to the physical manifestations that grief can take on a person. She has had to completely reconfigure how she runs and operates her business and day-to-day life. Dortha is passionate about raising awareness to help others who struggle with vocal disorders to gain support and understanding in their communities. |
| “My voice might be quieter, but my message is bigger than ever.” |
California USA
Business: Pretty Smart Virtual Services |
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| I am a writer. I am a member. |
| Susan is a 45-year-old woman that experienced the onset of a vocal disorder at the age of 38, during the prime of her career. Susan has an MBA and three undergraduate degrees, but suffered both personally and professionally as a result of her voice disorder. With so much to say and so little voice to say it she started to write and never stopped. |
| “I’m turning my experiences into a positive voice for advocacy and education.” |
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| I am a friend. I am a Support Group Leader. |
| Ron experienced the onset of Spasmodic Dysphonia 11 years ago. It ended his career in Customer Service. Maintaining a positive attitude and determined spirit, he changed career paths and now holds a successful position in financial services. He is the leader of the Tampa Spasmodic Dysphonia Support group and launched a yearly walkathon to raise funds for the National Spasmodic Dysphonia Association (NSDA). |
| “Keep a positive attitude and believe everything happens for a reason, it makes a world of difference” |
| Tampa, FL USA |
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| I am a teacher. I am a patient. |
| As a retired teacher, Beth struggled to project her voice in the classroom. Her children would say, “Mrs. A. has her funny voice today,” when her voice was bad. Beth says“You don’t realize how important voice is, until you don’t have it!” Beth serves as an area contact for the NSDA and supports the organization in order to further awareness and research. |
| “Never let the odds keep you from doing what you know in your heart you were meant to do.” (H. Jackson Brown Jr.) |
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| I am a daughter. I am an advocate. |
| Andrea is the founder of the Association for Vocal Disorders. She is passionate about improving day-to-day life for those impacted by voice restrictions. She started her journey in support of her Mom, who has Spasmodic Dysphonia. She continues because of the drive and support of so many who live with and advocate for those with these debilitating conditions. |
| “No one should feel their voice is not heard; that their words do not matter.” |
| Chattanooga, TN USA |
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