Lately we had the pleasure of interviewing Well being Chief Hope Tocci, who wished to share her expertise residing with Idiopathic Condylar Resorption. You’ll be able to learn her story under.
How would you describe Idiopathic Condylar Resorption to others?
I might describe ICR as a uncommon degenerative joint illness of the jaw/TMJ that may be a progressive, debilitating illness that impacts all elements of your high quality of life from bodily ache to emotional and psychological points — it even impacts the looks of your face leading to a recessed decrease jaw and chin with no aspect profile or jaw line along with an anterior open chunk.
What would you like folks to know about residing with this situation?
I need folks to know that though you can’t bodily see our ache, it doesn’t diminish the severity of our situation and what we wrestle with every day. People residing with invisible diseases and disabilities like ours, want your assist altering the tradition round this and elevating consciousness for TMD and ICR (ICR falls below the TMD class since it’s a uncommon kind of illness that impacts the jaw joints).
You shared how this might have been prevented should you acquired the correct care once you have been 13. What would you like others to learn about advocating for this situation or every other continual sickness?
I need others to know that firstly – you aren’t alone! Sadly, we should be our personal advocates with a purpose to obtain a correct prognosis, remedy and care. It may possibly actually save your life and/or stop the severity of your situation earlier than it’s irreversible. You recognize your physique greatest, and if you’re experiencing signs that others might not have the ability to bodily see – hold pushing for solutions. Early intervention is essential for TMD and by getting an MRI and/or CBCT scan, this can assist with discovering solutions, receiving a correct prognosis and remedy plan. There are lots of TMD signs that overlap with different medical situations, so imaging is essential to assist rule these out as an alternative of the trial and error course of that many docs do.
If I might return in time, I want I might have been extra persistent when docs have been dismissing me and demanded solutions earlier on in my journey. My largest symptom was ear ache – so for years they solely centered on that, even after I instructed them I’ve a historical past with TMJ/identified at 13 however gave me an pointless surgical procedure that resulted in everlasting listening to loss. By the point they lastly did the correct testing and recieved my appropriate prognosis, there was extreme everlasting harm and my situation was irreversible.
How do you advocate for TMJ situations and particularly for Idiopathic Condylar Resorption?
I take advantage of three social media platforms: Fb, TikTok and am a Affected person Chief on The Social Well being Community. I’m additionally a Affected person Ambassador with Snow Corporations which might be within the means of matching me with potential alternatives and occasions the place I’ll have the ability to share my story to assist others. The Fb group I created is named: Hope for the Silenced — TMJ/TMD & ICR Consciousness to assist increase consciousness, present affected person sources, share info, the most recent analysis and a protected place for our neighborhood to attach with others who really relate and perceive, with a protected place to debate points, share their journeys/experiences and ask questions or recommendation. My TikTok account can also be named Hope for the Silenced the place I take advantage of movies to lift consciousness, share my private experiences and journey to assist others, displaying what it’s prefer to reside with this illness from the affected person perspective, together with info to assist educate others and share sources like I do within the Fb group.
This Fb group additionally has a mentorship characteristic the place we assist mentor members which might be looking for extra individualized assist or help. Myself included, now we have 3 mentors out there. I’ve mentored quite a few members and have helped them discover the precise kind of docs, remedy choices to strive, assist with navigating the healthcare system and offering help to have somebody to speak or vent to. It has been really rewarding to assist others with discovering some reduction and being a part of their help system with having somebody to speak to that may really relate and perceive what they’re going by way of! My Mentees have been capable of finding the precise kind of TMJ specialist and get some reduction from their ache, which has been extraordinarily rewarding.
Do you’ve got any advocacy-related objectives that you just’re at the moment working in direction of? In that case, what are they?
Sure — I’ve quite a few advocacy-related objectives I’m working in direction of. In the end, my primary focus is to assist with enhancing higher affected person outcomes by addressing the dearth of analysis on this area, increase funds to have extra analysis and medical research performed to seek out simpler therapies/options, assist make the present therapies inexpensive as they’re extraordinarily costly, and push for extra preventive approaches for this situation for the reason that severity will be prevented with correct medical intervention.
What retains you going in your hardest days?
My help system has been extraordinarily useful on my arduous days. Dwelling in continual TMJ-related ache is unpredictable – you’ve got some good days, dangerous days, and horrible days. You must take heed to your physique to not overdo it and relaxation to stop flare ups. Having hobbies corresponding to writing, drawing, coloring and being an advocate hold me going. If I can assist stop others from having this horrible illness and attain the purpose of no return — that can hold me going the remainder of my life.
