Author Topic: New member  (Read 4245 times)

ziad_okeil

  • *
  • Posts: 45
  • Reason for joining: AL Amyloidosis - skin/Soft tissue involvement
  • Diagnosed: 03/2013
New member
« on: February 01, 2015, 10:33:15 am »
Hello everyone,

I am new member in this forum. I am a 40 year old male, living in Austria but originally from Egypt.
I have been diagnosed with Amyloidosis and smoldering MM two years ago at the age of 38 and this diagnosis has of course turned my life upside down. Before the diagnosis, as probably many of you, I had never heard about Amyloidosis. In fact, I had rarely been to the doctor before the diagnosis since I have always been quite healthy and fit.
Fortunately, the diagnosis showed Amyloidosis only in the soft tissues (skin) with no organ involvement, however, I have Amyloid infliltration in the tissues of my face which is causing my face skin to be coarser and thicker and my lips are permanently swollen. It is very disturbing!
Since I have no organ involvement till now, my doctors decided not to treat me immediately and to watch and monitor my case at a 3 month interval. The symptoms are increasing but rather slowly.
My hope now is to have a new drug that rids the body from the AMY deposits and turn this horrible disease into a nuisance that one can live with! As of now,  my options are limited to Chemotherapy which might bring me more harm than benefits!
It is a great thing to find a forum like this one where one can share and gain experience with people who can totally understand one’s situation.
I, therefore, would like to thank Miriam for her efforts for creating this forum and allowing us to use such an amazing tool.
And I also would like to thank my dear friend Pat not only for introducing me to this forum but also for being such a great source of information and such a support for me in the last couple of years!
I wish you all well and looking forward to sharing information with you.

Regards,
Ziad
Ziad

patpinchin

  • *****
  • Posts: 600
  • AL - extensive in skin. mouth + palatal nerves '04
Re: New member
« Reply #1 on: February 01, 2015, 11:10:50 am »
Hello Ziad,

Welcome to the forum. Our first Egyptian!  I hope you will find the resource friendly and helpful. Not good that this ugly and cruel disease brought us together perhaps because we both have cutaneous amyloid which is relatively unusual. Cutaneous amyloid may not be life threatening but its symtoms are nonetheless very distressing causing sufferers to often be very unwell even after a very good partial response to chemo. This is because amyloid does not regress from soft tissue such as skin and nerves.

However, out of bad often comes good, and the best thing is that the illness has brought us together. We have become such good friends and mutually supportive. I am sure our fellow members will be as amazed as I was when we first "met" at how exceptional your English is for a non bi-lingual speaker who has never visited an English speaking country! I look forward to the day when I am well enough to meet you and my other amyloidosis friends in person. I deeply appreciate such friendship.
« Last Edit: February 01, 2015, 01:19:04 pm by patpinchin »
Pat

ziad_okeil

  • *
  • Posts: 45
  • Reason for joining: AL Amyloidosis - skin/Soft tissue involvement
  • Diagnosed: 03/2013
Re: New member
« Reply #2 on: February 01, 2015, 03:25:29 pm »
Thanks a lot, Pat!
Ziad

Lesley

  • ***
  • Posts: 177
  • Reason for joining: Amyloid patient (AL)
  • Diagnosed: December 2012
Re: New member
« Reply #3 on: February 02, 2015, 02:52:46 pm »
Welcome Ziad - I hope you gain benefit and comfort out of the people here on the forum.
Lesley