Frequently Asked Questions

Have the treatments helped so far?
Yes. I am already better, compared with last year. I used to have intense, daily, physical pain. It felt like my entire body was burning while healing from broken bones. Even under my fingernails. That has gotten better since I began my treatments.

What is a typical day like for you?
I have difficulty managing simple tasks that used to be very easy for me. I‘m in the infusion room Monday through Friday. I am there from two to over 5 hours a day. Occasionally, I will have a good day and can take care of all the little tasks that have built up (i.e. laundry, take out the trash, get food). My life has become very small lately.

What neurological symptoms do you suffer from?
Certain days are complete and utter madness. My body is one in which I can’t always count on and has helped me rely more on my spirit. I’ve learned there will be many days which it feels as if my body and mind have abandoned me. Through endurance I have done my best to not take it all so personally. At times I can’t move my head and to breathe is exhausting. I get ultra sensitive to my surroundings and become very confused. My brain actually becomes inflamed causing cognitive dysfunctions, anxiety, lapses in memory, migraines, vomiting, visual disturbances, diminishing of eye sight, intense burning pain…..There has not been one part of my body that has not been affected. It’s an illness which has for the most part, confined me to my bed and felt as if it has robbed me of many dreams and aspirations I once had and hope I will get back to.

What type of treatments do you receive for your illness?
I get everything from IVIG, vitamins, large dose IV steroids to IV antibiotics. The total cost for everything right now is around $600,000 per year. I am very lucky to have insurance that covers most of it. Unfortunately, coming up with the out-of-pocket portion has been challenging. I never thought I would lose my ability to be self-supporting.

What are you going to do if the treatment is successful?
I want to be a voice for others who are suffering; children, women, men and elders who are being told they are hypochondriac. For example, people sitting in psychiatric wards questioning and being questioned about their sanity, who are in pain, body,  mind and spirit and have felt like or have lost their voice and hope. I want to help the many under distress get the right tests. I want to be an example of how they can do this with joy in their lives, laughter and soundness of mind. If I could help one person, catch their disease early and not go through what I have had to, I would honestly leave this world a happy woman.

Is my donation tax-deductible?
No, unfortunately. We have not applied for non-profit status with the IRS, so your donation is not deductible.

If you have specific questions about anything here, feel free to post them below. A link to Azadeh’s personal blog can be found on the menu to the right. 

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