4 responses

  1. Sophia Kassem
    November 12, 2013

    This is the website for my gofundme campaign to raise money for a stem cell transplant for my sister:

    http://www.gofundme.com/56b35g

  2. Sophia Kassem
    November 12, 2013
  3. Yoni Maisel
    November 11, 2013

    “I asked him to order the test that can confirm this disease.” I love how the family took charge in the situation, did research, and said “please do the tests.” I have a primary diagnosis of CVID and a secondary of Sweet’s Syndrome. The Sweet’s diagnosis went undiagnosed for about 15 years. I too did some research and new what it was despite doctors telling me for years that the characteristic sores were mosquito bites. One day I went to the doctor during a severe breakout and said “I’m not leaving until you do a biopsy. I know what it is!” i was right.

    I am glad that Laura finally got her diagnosis…it is the first step in beginning the fight; knowing what you are dealing with! I wish you all the best – health, happiness, and longevity.

    BTW – I get IVIg treatment monthly for the CVID and also had Aseptic Meningitis as a result. After the fourth treatment it got better – to the point where the infusions now go much more smoothly.

    • Sophia Kassem
      November 11, 2013

      Yoni, I am glad you advocated for yourself and were able to find out what was causing the sores. Patients often have to be their own advocates, especially when they have a rare disease. I am glad that IVIg has worked out for you! Best wishes on your journey with CVID and Sweet’s Syndrome!

      Sophia

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