Author Topic: Diagnosis  (Read 1345 times)

Anna D

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  • Reason for joining: Family member
  • Diagnosed: 15 July 2019P
Diagnosis
« on: July 24, 2019, 10:48:39 pm »
My husband's excision skin histology report summary says: Cutaneous Amyloid Deposition.
The report suggests some investigation to be done to exclude systemic amyloidosis.
The local GP doesn't know much about amyloidosis.
I have been reading NAC forum and essential information recently. I'm trying to establish our next step.
Neil will do blood test today. How far are we from diagnosis to treatment? Do we have a chance of being diagnosed living in New Zealand?
Neil is a New Zealander with British passport. Should we consider a trip to UK to visit NAC clinic? Sorry, too many questions. But it is a very frustrating time for us dealing with unknown illness. Our son is only ten years old. Hope Neil will be around to see him grow.
Any advice appreciated.
Anna
« Last Edit: July 25, 2019, 12:59:16 am by Anna D »

Miriam Vered

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Re: Diagnosis
« Reply #1 on: July 25, 2019, 04:18:40 pm »
Hi Anna,
Amyloidosis in the skin is often localized amyloidosis, which is usually treated by a dermatologist rather than an amyloidosis specialist; surgical excision may sometimes be appropriate. This is a very different disease to systemic amyloidosis. For more information on localized amyloidosis in the skin, see page 3 in our patient information leaflet - https://www.ucl.ac.uk/drupal/site_amyloidosis/sites/amyloidosis/files/localised_amyloidosis.pdf
Professor Gillmore at the NAC has recommended an amyloidosis specialist in New Zealand - Dr Hugh Goodman, consultant haematologist,  email:Hugh.Goodman@waikatodhb.health.nz


I hope that helps.

Anna D

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  • Posts: 2
  • Reason for joining: Family member
  • Diagnosed: 15 July 2019P
Re: Diagnosis
« Reply #2 on: July 25, 2019, 11:06:37 pm »
Dear Miriam
Thank you so much for your reply. Goodman is a good name for a doctor! Neil's blood test will be ready next week, so we definitely will follow up your advise re Waikato clinic. I will pass the contact to our local GP so both doctors can exchange files.
Will keep in touch.
Kind regards
Anna