Recently we had the pleasure of interviewing Health Leader Hope Tocci, who wanted to share her experience living with Idiopathic Condylar Resorption. You can read her story below.
How would you describe Idiopathic Condylar Resorption to others?
I would describe ICR as a rare degenerative joint disease of the jaw/TMJ that is a progressive, debilitating disease that affects all aspects of your quality of life from physical pain to emotional and mental issues — it even affects the appearance of your face resulting in a recessed lower jaw and chin with no side profile or jaw line in addition to an anterior open bite.
What do you want people to understand about living with this condition?
I want people to understand that although you cannot physically see our pain, it does not diminish the severity of our condition and what we struggle with on a daily basis. Individuals living with invisible illnesses and disabilities like ours, need your help changing the culture around this and raising awareness for TMD and ICR (ICR falls under the TMD category since it is a rare type of disease that affects the jaw joints).
You shared how this could have been prevented if you got the proper care when you were 13. What do you want others to know about advocating for this condition or any other chronic illness?
I want others to know that firstly – you are not alone! Unfortunately, we must be our own advocates in order to receive a proper diagnosis, treatment and care. It can literally save your life and/or prevent the severity of your condition before it’s irreversible. You know your body best, and if you are experiencing symptoms that others may not be able to physically see – keep pushing for answers. Early intervention is crucial for TMD and by getting an MRI and/or CBCT scan, this will help with finding answers, receiving a proper diagnosis and treatment plan. There are many TMD symptoms that overlap with other medical conditions, so imaging is crucial to help rule those out instead of the trial and error process that many doctors do.
If I could go back in time, I wish I would have been more persistent when doctors were dismissing me and demanded answers earlier on in my journey. My biggest symptom was ear pain – so for years they only focused on that, even when I told them I have a history with TMJ/diagnosed at 13 but gave me an unnecessary surgery that resulted in permanent hearing loss. By the time they finally did the proper testing and recieved my correct diagnosis, there was severe permanent damage and my condition was irreversible.
How do you advocate for TMJ conditions and specifically for Idiopathic Condylar Resorption?
I use three social media platforms: Facebook, TikTok and am a Patient Leader on The Social Health Network. I am also a Patient Ambassador with Snow Companies that are in the process of matching me with potential opportunities and events where I’ll be able to share my story to help others. The Facebook group I created is called: Hope for the Silenced — TMJ/TMD & ICR Awareness to help raise awareness, provide patient resources, share information, the latest research and a safe place for our community to connect with others who truly relate and understand, with a safe place to discuss issues, share their journeys/experiences and ask questions or advice. My TikTok account is also named Hope for the Silenced where I use videos to raise awareness, share my personal experiences and journey to help others, showing what it’s like to live with this disease from the patient perspective, along with information to help educate others and share resources like I do in the Facebook group.
This Facebook group also has a mentorship feature where we help mentor members that are seeking more individualized help or support. Myself included, we have 3 mentors available. I have mentored numerous members and have helped them find the right type of doctors, treatment options to try, help with navigating the healthcare system and providing support to have someone to talk or vent to. It has been truly rewarding to help others with finding some relief and being part of their support system with having someone to talk to that can truly relate and understand what they’re going through! My Mentees were able to find the right type of TMJ specialist and get some relief from their pain, which has been extremely rewarding.
Do you have any advocacy-related goals that you’re currently working towards? If so, what are they?
Yes — I have numerous advocacy-related goals I am working towards. Ultimately, my main focus is to help with improving better patient outcomes by addressing the lack of research in this field, raise funds to have more research and clinical studies conducted to find more effective treatments/solutions, help make the current treatments affordable as they are extremely expensive, and push for more preventive approaches for this condition since the severity can be prevented with proper medical intervention.
What keeps you going on your hardest days?
My support system has been extremely helpful on my hard days. Living in chronic TMJ-related pain is unpredictable – you have some good days, bad days, and horrible days. You have to listen to your body to not overdo it and rest to prevent flare ups. Having hobbies such as writing, drawing, coloring and being an advocate keep me going. If I can help prevent others from having this horrible disease and reach the point of no return — that will keep me going the rest of my life.