Thank you Miriam for informing us of this potentially very useful and informative study for the mutual benefit of all patients and NAC Drs and all our NHS Drs locally involved in our care.
What an original and very worthwhile idea by the NAC. Our NAC team never ceases to impress. The NAC is forever innovative and continually working very hard indeed to reach out to increase amyloidosis awareness amongst all medical professionals across the U.K. to promote earlier suspicion or diagnosis of amyloidosis at local level. The way in which patients use NHS services locally is most important in complementing the work of our NAC Drs.
My case is very rare even "unprecedented", I have been frequently told so I hope the study will include oral amyloidosis patients rare tho' they may be. Whilst my form of the disease is non threatening, without chemotherapy it could have progressed to internal organs and indeed could still do so. There is much less interest in oral amyloidosis yet in my case my suffering is chronic. I was diagnosed in 04 but not treated until 08/09. The chemotherapy brought remission 2.05 years later. During that time amyloid continued to deposit. I knew this because I could see new nodules of amyloid throughout my skin and mouth and my chronically damaged nerves in my hard palate were worsening to an intolerable level. I saw numerous Oral Consultants both locally and in London but none was able or interested in trying to help relieve the symptoms which were seriously affecting my quality of life and continue to do so. My search for symptom relief continues to this day. The best thing after all these years is that there is interest locally at last in my unusual case. It took until 2015 to find a Consultant interested in chronic neuropathic conditions. In 2016 he referred me an NHS Oral Consultant locally who has previously cared for 5 patients with oral amyloidosis. He was always there, so he was astonished as I was that I had never been referred to him until 2016. Of the 12 Oral specialists I have seen since 2004, he is the one and only interested in oral amyloidosis and is seriously trying to help. He is so interested in my rare oral amyloidosis that he has included a section about my manifestation of oral amyloidosis in a new medical anatomy book (yet to be published) to which he has contributed a chapter.
