A.S. Face 1370: Anna

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Anna has been lobbying for AS awareness and NIH funding in DC during Awareness Month.

During Spondylitis Awareness month, Anna visited several Congressmen in DC. She told them about AS and how it makes her back hurt and makes her tired and how she got a skin biopsy to help researchers at NIH. Here are some photos if you want to share. Congressman Jim Jordan tweeted about her visit and put it on his facebook page. Speaker Boehner is going to put an article on his blog (they just contacted us yesterday). She is building awareness! She is working to kick AS!

As a mother of a child with AS, this site helps me understand her better to read through everyone’s experiences. Thank you all for sharing your story.

Here is my daughter’s story…

 

Anna’s symptoms started when she was two years old. She would wake up screaming in the middle of the night and had random fevers, vomiting and nose bleeds. She said “bugs were biting” her back. She didn’t want to go up or down the stairs. She would randomly lay down during play time. If we tried to walk around the block, she would sit and say she “had no more runs left”.

 

Anna is 5 now. She tried sulfasalazine with no help. She was on Enbrel for two years, but her inflammation (both in her SI joint and hips) continues and she already has bone erosion in her SI joint. She is now on Orencia. She has a great team of doctors and is also being seen by specialists at the National Institute of Health. We were told she is the youngest confirmed case of AS ever documented. Not something you want to be known for, but we are grateful for the doctors and their wisdom.

 

Anna continues to smile. She will rarely admit when she is in pain although we can see it. She pushes on and I honestly don’t think she has any memories without pain.

She is a BRAVE fighter and we are very proud of her and will be here to lift her up. Always.

 

From a proud mother of a Brave AS warrior

Ohio, United States of America


7 Responses to “A.S. Face 1370: Anna”

  1. Dear Anna’s mother,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. WOW!! My father worked with NIH…she is indeed getting excellent care! I am soo sorry she(and your family) are having to deal with this. The good news…if there is such a thing…is that meds are getting better…and gratefully she is diagnosed. I just told my wife earlier this morning that I wished it hadn’t taken 20 years to diagnose me…if I had biologics like Enbrel(I am on Simponi currently) when I first exhibited symptoms I wouldn’t have progressed to the point I am now. So while things seem bleak…keep your chin up…take comfort she is diagnosed and on meds and being seen by some of the brightest minds of our time.

    You are correct there needs to be much more “press” about AS…I am doing my small part…my aquatic therapist will be wearing an AS bracelet as she runs in the upcoming Boston Marathon. I am face 1366…and I am on your team!

    • Thad – thank you. I read your story. You are brave. Everyone on this site is brave. I am so grateful to have found “a home” that understands for us. I am grateful for her quick diagnosis but I am very worried as the doctor at NIH told us that Enbrel and Humira are “the drugs” for this disease and although Anna has been on both – her disease continues to progress as a very fast rate. We are trying Orencia and have basically been told we will likely be moving to Remicade next. We have 5 other children and we are awaiting the blood tests NIH performed on both myself and my husband to see which one of us has the HLAb27 gene. Hoping our other kids don’t start showing symptoms. Thank you all for letting me vent and talk to people WHO UNDERSTAND!

  3. I feel for your pain. I know you want to do everything possible for your child to eradicate the symptoms of AS. I’ve had it for 40 years and my early diagnosis did little good back then and in subsequent years. Not until I met Dr. Alan Ebringer online at the Kings College of Immunology in London. Laboratory studies show that Processed wheat is undigested in a majority of HLA B27+ patients and therefore “feeds the AS process”. I believe it because 8 years ago I quite eating wheat and went on an anti inflammatory diet of mainly pineapple, cinnamon, turmeric, organic honey, bananas, probiotics and green leafy vegetables along with other spices. Even Cannibas has proven to regulate digestive and neurological function in AS patients- and I am proof that it works. My only goal here is to introduce to you an alternative method, as I only take Celebrex(NSAID) and I’m in the best shape of my life at 54 years of age. I even started running again. WOW ! I no longer have Psoriasis, Iritis, Vertigo and my flares are felt, but very mild, even with a classic case of AS, I have changed my life.

    Please let us all know, if you decide to try this, how it benefits your lovely and precious daughter !!! I wish the best for you.

    Steve Mieras
    Grand Rapids, MI
    616.437.6460

  4. I am WITH you…I.understand the trepidation. If she is not responding, keep trying! Don’t lose hope. I only wish they had caught my AS early. I have faith in the biologics they are using now. Enbrel and Humiera did not work for me but work great for some folks. I am pretty far advanced in the disease but SIMPONI seems to help me some. The advantage to SIMPONI is it is a once a month injectible so it avoids the weekly needle and in an auto injector pen. Can’t hurt to mention it to your team of docs. I have just discontinued it because it lowers my ability to fight infection even lower than it already is due to AS…all biologics do that. I am having spine surgery Dec. 2 so…they asked me to take a break from it…keep us posted on her progress… If you want to email me direct…it’s thad.crowe@gmail.com

    Hang in there!!

  5. To see a child with this is heartbreaking. Yet to see the smile on Anna is a rewarding peace that A.S. can be treated with quality care. Thank you for sharing your daughter’s story.

  6. To see a child with this is heartbreaking. Yet to see the smile on Anna is a rewarding peace that A.S. can be treated with quality care. Eliminating wheat and sugars that is not well digestible for many, has merit with the ‘leaky gut’ theory of activating A.S.. I found that a few TUMS can reduce this as well as provide a more absorbing elemental calcium, taken along with vitamin D. The vitamin D blood test is also very important. Thank you for sharing your daughter’s story.

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