My perspective on this type of content, not just from Kevin Mann but also dermatologists, is our community, unfortunately, needs to accept that it will remain until we advance important research and our own awareness efforts. We are still in a position where these bad actors can completely dismiss our condition.
So where can we spend our energy instead?
1. Complete the patient survey. This is such a simple action and only takes 1-2 hours to complete. It helps build a complete symptom profile of our condition, which is extremely important for advancing research and clinical appreciation. Check this video for how to, if you haven’t already.
2. Participate in the upcoming video podcast, or if you prefer to remain anonymous, ask a family member. We need our content to drown out their content. Currently, our message can easily be dismissed. But by creating content like the video podcast that humanises our disease, these other voices start to become muted. It’s telling that our patient compilation series now has over 1.7k views, a 95.3% like vs dislike ratio, and importantly, no negative or troll comments. If anyone were to comment negatively, they would look like a complete dick and they know it. What is also heartening are the comments across our videos from people who were considering finasteride, who said they will now not take the drug. That’s another small victory. We already have six guests lined up, including two brave patients, family members, and a clinician, but reach out to me via PM if you are willing to speak publicly, as we will begin in April.
3. Ask a family member or loved one to contribute to our new Family Advocacy Group. Families and loved ones can be a chorus of helpful support for any disease community, particularly one which is as stigmatised as ours. They can help with advocacy, awareness and fundraising for important research. We’ve recently started one and had only one volunteer from the community outside the moderator group. We have four other volunteers already, but we need more! Imagine an army of Mums and Sisters amplifying our message and advancing our cause!
4. Think about an amount you could set aside for possible upcoming research. We have been working diligently over the past two years to identify the most suitable research, and researchers, to investigate our condition, and recently made a post about a study we’re hopeful will go ahead later this year.
All of these things are a great investment of time, and in my opinion, far better than trying to take down Kevin Mann.
Best,
Mitch