The results of the survey that our very own Botox Dysport (Side Effects) Support Group played a crucial role making possible are IN! We can't thank our group members enough for taking the time to complete this survey. Our support group is the largest International botulinum toxin injury support group and goodness did we put this survey in front of our group members! We used our online social media channel on Instagram @nevertox to help drive the survey, and we routinely linked it in our support group. We are astounded (but not surprised) that 655 people participated!
This study is groundbreaking as it is based on the largest survey to date looking closer at botulinum toxin injury. Some key take aways from this study, (linked below.) "Quantitative and qualitative analysis of individual experiences post botulinum toxin injection - United Kingdom Survey" are that group participants were gathered in a short time period. 655 participants in ONLY 3 months. Meanwhile, the UK reporting body, the MHRA only has a fraction of this number of reports in 19 years! The biggest question, is Why so few reports?
The survey looked at adverse events experienced by sufferers, so whether they were long-lasting physical, psychological, emotional, and even financial adversities. Some common adversities reported by participants were but not limited to: pain, anxiety, migraines, and panic attacks.
One common theme amongst participants was that they had a lack of awareness on how or where to report adversities to botulinum toxin. Then, there was an overwhelming majority of participants, 78% that sought help with their practitioner and were refused it! Also to mention, inappropriate facilities where people received injections were reported, for instance in someone's home or even at Walmart!
In the survey a staggering 69% of participants said that they were suffering long-term consequences from their adversities, and 68.4% of them had not recovered from physical harm, injury, or illness. This is absolutely NO surprise to us, as we have thousands upon thousands of support group members who have reported the exact same!
This study has truly highlighted the great need for immediate change to increase patient safety, information, practices, and consent for those who seek the use of botulinum toxin. We ask both the manufacturers and industry providers, as well as regulating bodies to step up and take action to implement licensing schemes and other regulations to safeguard the public. We are absolutely shocked by the confirmation this study provides of an intense LACK of empathy and patient care by industry providers, product manufacturers, and regulators.
NOW is the time and need for great change! Some questions we should ALL be asking..
- Where are ALL the botulinum toxin injury reports going?
- Why do people NOT know who their regulating body is?
- What should be done about the fact that major adverse effects to botulinum toxin are occurring in over 50% of people injected?
- What should be done about the fact that people who are injured by botulinum toxin are NOT recovering?
- Why are providers turning patients away who seek help for botulinum toxin injury?
(And MORE! Please type another question in the comment section that we should ALL be asking about the issues raised by this mind-blowing study.)
Lastly, we would like to extend our gratitude and special thanks to the study's team: David Zargaran, Alexander Zargaran, Sara Sousi, Dawn Knight, Hannah Cook, Alexander Woollard, Julie Davies, Tim Weyrich, and Afshin Mosahebi
(In addition to online support group/communities and other organizations that participated in helping to drive this survey. We thank you!)
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