Just lately we had the pleasure of interviewing Well being Chief Hope Tocci, who needed to share her expertise residing with Idiopathic Condylar Resorption. You possibly can learn her story beneath.
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 facets 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 facet profile or jaw line along with an anterior open chunk.
What would you like folks to grasp about residing with this situation?
I would like folks to grasp that though you can’t bodily see our ache, it doesn’t diminish the severity of our situation and what we battle with each 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 beneath the TMD class since it’s a uncommon kind of illness that impacts the jaw joints).
You shared how this might have been prevented if you happen to bought the right care once you have been 13. What would you like others to learn about advocating for this situation or another power sickness?
I would like others to know that firstly – you aren’t alone! Sadly, we have to be our personal advocates in an effort to obtain a correct prognosis, therapy and care. It will possibly actually save your life and/or forestall the severity of your situation earlier than it’s irreversible. You already know your physique greatest, and in case you are experiencing signs that others could not be capable to bodily see – hold pushing for solutions. Early intervention is essential for TMD and by getting an MRI and/or CBCT scan, this may assist with discovering solutions, receiving a correct prognosis and therapy plan. There are a lot of TMD signs that overlap with different medical circumstances, 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 once I instructed them I’ve a historical past with TMJ/recognized at 13 however gave me an pointless surgical procedure that resulted in everlasting listening to loss. By the point they lastly did the right testing and recieved my right prognosis, there was extreme everlasting harm and my situation was irreversible.
How do you advocate for TMJ circumstances 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 Firms which might be within the means of matching me with potential alternatives and occasions the place I’ll be capable to share my story to assist others. The Fb group I created is known as: Hope for the Silenced — TMJ/TMD & ICR Consciousness to assist increase consciousness, present affected person assets, share data, the most recent analysis and a secure place for our neighborhood to attach with others who really relate and perceive, with a secure place to debate points, share their journeys/experiences and ask questions or recommendation. My TikTok account can 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, exhibiting what it’s prefer to reside with this illness from the affected person perspective, together with data to assist educate others and share assets like I do within the Fb group.
This Fb group additionally has a mentorship characteristic the place we assist mentor members which might be in search of extra individualized assist or assist. Myself included, we’ve 3 mentors obtainable. I’ve mentored quite a few members and have helped them discover the best kind of docs, therapy choices to attempt, assist with navigating the healthcare system and offering assist to have somebody to speak or vent to. It has been really rewarding to assist others with discovering some aid and being a part of their assist 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 best kind of TMJ specialist and get some aid from their ache, which has been extraordinarily rewarding.
Do you’ve any advocacy-related targets that you simply’re at the moment working in the direction of? In that case, what are they?
Sure — I’ve quite a few advocacy-related targets I’m working in the direction of. In the end, my important focus is to assist with enhancing higher affected person outcomes by addressing the shortage of analysis on this area, increase funds to have extra analysis and medical research carried out to seek out more practical remedies/options, assist make the present remedies inexpensive as they’re extraordinarily costly, and push for extra preventive approaches for this situation because the severity might be prevented with correct medical intervention.
What retains you going in your hardest days?
My assist system has been extraordinarily useful on my laborious days. Residing in power TMJ-related ache is unpredictable – you’ve some good days, unhealthy days, and horrible days. It’s important to hearken 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 will help forestall others from having this horrible illness and attain the purpose of no return — that can hold me going the remainder of my life.
