Contact

You can find more info about me and my work at www.abouttimepr.com and www.ilanawrites.com.

Press & Product Reviews:  I do sometimes do product reviews, depending on how they relate to my content, but you’re always free to pitch them to me at ilanawrites@gmail.com. To schedule interviews or public speaking engagements you can also email or call 561-542-1105. (And don’t be surprised if I sound disoriented, I’m always just waking up from a nap. Like, always.)

A note to readers: I love to hear from readers of my blog. Hilariously, I’m actually getting a lot of feedback since my Cosmo article so I’m working my way back through your letters in between work and migraines. I’m not ignoring you. We’re totally still cool.

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Also--while I love hearing other patient’s stories I URGE you not just to share them with my lowly inbox, but to the entire rare and chronic disease community through Global Genes. You can submit your patient stories here: http://globalgenes.org/patient_story_submission_form

  • I admire your inspirational story and work you are doing. I lost my vision 6 years ago after contracting a rare strand of bacterial infection that attacked my retinas. It took me two years to find all of the available resources for the blind. I was frustrated with the lack of centralized information so I created http://www.imuneek.com. Its a website that instantly connects people to all available resources on our site, like other people, organizations, doctors, news, events, and an answer forum specific to your medical condition or disability, physical or mental. i would like to work with you in spreading the awareness and resources available. Please email me at marbitman@imuneek.com so we can schedule a time to speak. I am not a blind person trying to use a computer, I am a computer user who is blind.

  • Rita

    My heart goes out to you for all you have and still going through. I will pray for you. Miracles do happen and hope the Good Lord will heal you soon. If you are not familiar with the beautiful oasis of peace and great/extrodinary healings in Medjugorje, check it out. (Medjugorje.org) Millions go there everyyear since 1981. I’v been there several times and am always filled with a renewed peace and addidtional healing. This is a special place our good God has given us through his mother for healing. I hope and pray the best for you. God bless you.

  • Hope

    Your story resonated with us. My son, then 7 weeks old, had jaundice, so after a routine blood test, we were surprised to hear the diagnosis from his pediatrician that he had a rare blood disorder called Neutropenia.

    We were referred to a specialist at the Children’s Cancer Hospital in Syracuse, NY, where my infant endured many many testings. The doctors told me that he needed a bone marrow transplant as he only had 3% of the white cells to fight bacteria. They stressed the severity of his condition that a simple fever could send us to the ER where his condition could “crash” quickly and always feared meningitis. Unfortunately, given the rarity of his disorder, the treatment options could not ensure me that his life would improve.
    It was living on pins and needles 24/7. For the first 4 months of his life, we couldn’t go out, except for doctor visits. Every night, I would disinfect my entire house, clean his sheets and toys everyday and wash my hands a hundred times a day just to spare my child any sufferings. I felt robbed as a mother. Whereas, I could give endless kisses to my 3 year old daughter, I could not kiss my son, as I feared of passing any germs to him. It was misery of the highest order.

    To make this brief, I did my homework, got in touch with an organization in Canada that understood what I was facing and gave me some direction.
    Those were dark years, because no one could really understand what he had and how to help me help my son lead a quality life.

    Fast forward 15 years, no bone marrow transplant, no more visits to hospitals aside routine well child appointments, regular childhood illnesses, or sports related issues. Recently, he’s been diagnosed with asthma, and has had allergies, but the future is brighter with him thriving as a student athlete.

    In closing, I’m not advocating going against a doctor’s advice, only sharing what I had experienced and hope others can find the answers to whatever they’re seeking and not suffer or give up.

    Good health,
    Hope Petkopoulos

  • Regina

    Thank you for your (unexpected) aol piece. I have the rare disease constellation too — Ehlers Danlos, POTs – tiny fiber… hypogammaglobulinanemia – the list goes on. The nagging feeling that every time I go to see a doc…something new will appear…is always in the back of my mind. I’ve been “dumped” by doctors who just told me to deal with it – that there was nothing they could do. There was that moment of feeling sorry for myself — But they are all since gone. I now have a core team of 7 doctors who all like each other, respect each other and work together (though they are in different practices access one medical records portal) . This has made all the difference (plus I make sure they’re aware of the latest research/findings) in helping me live a productive, joyful and full life.

    I am grateful to you for sharing your story.

  • Jess

    I stumbled upon your site. I have gastroparesis and it has resulted in a pending divorce and a lot of “what am I going to do who is going to love the sick girl?” Your blog gave me a lot of comfort when I needed it most. Thank you so much. Is it weird to want to be “totally can heave into a bag in their handbag” buddies?

  • chris kuell

    Hi Ilana — I’m trying to contact you for permission to reprint your work in an anthology. Please contact me at breathandshadow@gmail.com Thanks, chris