Allison’s Story
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If you would like to help with the medical expenses of my two sisters and me, it would be greatly appreciated!  Two of us have been formally diagnosed with Mast Cell Activation Syndrome and Ehlers-Danlos syndrome, and another sister has the elevated labs and symptoms but needs evaluated to be diagnosed.  We had been seeing a specialist in Charleston, SC, but he moved to Minneapolis, MN.  It will be much more expensive now to get to our appointmentts, and there isn't anyone close that can guide our local doctors in our treatment.  


God is doing a marvelous work in my heart and life through physical trials! I have Ehlers-Danlos Syndrome Type 3 and Mast Cell Activation Syndrome.  I hope you spend some time reading my story! Please take a minute to sign my guestbook! I really appreciate your encouraging notes! Be sure to sign up for email alert! Thanks for visiting!

Isaiah 26:4
"Trust ye in the LORD for ever:  for in the LORD JEHOVAH is everlasting strength:"

I am a 22 year old who enjoys playing the trumpet, listening to classical music, photography, being outdoors, laughing, and anything purple & zebra stripes!  The Lord has blessed me with a sweet supportive family of 8 (other than me) ~ Dad, Mom, 5 sisters and 1 brother!

My journey began in April 2007 when I had my first anaphylactic reaction to a casserole and had to go to the emergency room.  I had been having strange sensations in my mouth when I would eat certain foods for about 6 months prior to this reaction but would just eliminate the foods.  I still struggle with anaphylactic reactions to most drugs (including pain relievers) and many foods.  I can only eat very few things.  In December 2008 I broke my clavicle and messed up my shoulder and SC joint.  My SC joint began bruising and swelling and was bruised for several months.  After that, things seemed to go down hill!  I began having a lot of trouble with my joints (knees, ankles, shoulders, wrists, neck, and back) and easy bruising.  My right shoulder will pop and I lose all motion and almost all feeling in it.  I was wheelchair bound from December 2010 to March 2011.  I then was able to walk with a walker and air casts on my ankles and braces on my knees, although I could only walk for very short distances.  I can sometimes walk unassisted wearing HKAFO (Hip, knee, ankle, foot orthotics) braces although sometimes I use forearm crutches or a wheelchair.  I am unable to walk without my braces because my knees hyperextend (go backwards) and my ankles turn.  I can no longer walk at all on my own!  I have been to several specialists, and after 4 years of waiting & wondering...I was diagnosed with Ehlers-Danlos Syndrome type 3 (Hypermobility Type) on October 25, 2011.  I was diagnosed with Mast Cell Activation Syndrome on April 23, 2012 which explains all of my symptoms.  I was diagnosed with Dystonia on December 18, 2012.  I have been diagnosed with Chiari 1 malformation but at this point the doctors do not believe that it is causing any of my symptoms.  Before all this started I was a "normal" child (other than joint pain & slow healing of joint/bone injuries) with a love for the outdoors!  I loved rollerblading, biking, riding scooter, and jumping on my pogo stick!  I rely on the Lord for my strength!  He is the Great Physician and I know that whatever happens is in His hands!

Please pray for me!  I am really thankful for people that pray!  It is a great encouragement to me!
II Corinthians 12:9
"And he said unto me, My grace is sufficient for thee:  for my strength is made perfect in weakness.  Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
Matthew 11:28
"Come unto me, all ye that labour and are heavy laden, and I will give you rest."
Luke 18:27
"And he said, The things which are impossible with men are possible with God."

Newest Update

Journal entry by Allison Workman

Hi friends!

I am so sorry for not updating sooner!

I had my J tube surgery on Thursday the 22nd of February.  Things went well with the surgery, and I now have two holes with tubes coming out of them, one in my stomach and the other in my intestines.  So...without further Calamity the G tube and Jane the J tube! :)

I came out of J tube surgery sometime early Thursday evening and had the rest of the evening to recuperate (ha!) before being whisked away to radiology early Friday morning to get a Hickman placed in my chest.  Lovely!  Thankfully I got a sweet anesthesia team who very graciously “knocked me out” quickly and didn’t make me lay flat on the table before going under!  I was in SO much pain from them butchering my gut the afternoon before and laying flat just was NOT an option! I’m very glad I expected a lot of pain despite the surgeon saying about not being very painful. I came to the conclusion that he has never had J tube surgery done on him before! ;) hurt (and still does), a lot! Anyways, I got Henrietta the Hickman on Friday the 23rd of February.  I actually didn’t have all that much pain/soreness from the Hickman placement. I told them it probably was kinda like the saying “when you have a headache hit your big toe with a hammer and your head won’t hurt anymore” gut hurt so bad my brain didn’t care about the Hickman! ;) Once the Hickman was in place, my nurse removed the 2 midlines they had placed while I didn’t have a central line. I was very grateful to only have IV lines coming from one source instead of a midline in each arm...that makes everything complicated! :) They had taken me off my Lovenox (blood thinner) the morning of my J tube surgery because they didn’t want me to bleed extra during the surgery nor did they want me bleeding into my abdomen afterwards.

Well, the morning after they removed the midlines, I noticed a very large knot (nearly baseball size) in my upper right arm where one of my midlines had been. I recognized it from the get go and showed it to my nurse. The nurse got in touch with the doctor and upon seeing it, she ordered an ultrasound. Yep, you may have guessed it by now...I had a clot. Thankfully it was only superficial and wasn’t a serious clot. I was then started back on my full dose of Lovenox to prevent that happening with my Hickman!

After 13 days in the hospital, I was finally discharged on Monday!  I am still in quite a bit of pain at the J tube site.  My 5 small incisions are healing very nicely.  I ended up in the ER on Thursday because my J tube site had begun to bleed on Wednesday afternoon.  We contacted the surgeon’s office to see what I should do or if it was something normal.  They wanted me to go to the ER due to the bleeding, pain, and me being lightheaded when I was up.  My hemoglobin was quite low in the hospital, so I think that made them a bit more concerned about it.  SO, as I said, I went to the ER on Thursday.  They did some blood tests and a CT scan.  I had low potassium and the CT scan showed a hematoma right at the J tube stoma.  They said the bleeding and pain are probably coming from the hematoma.  Yesterday, I got yet another IV infusion of potassium.  My potassium was low in the hospital and I was given 4 bags of IV potassium.  When I was discharged from the hospital it was still low.  Then the ER tested it on Thursday and it had dropped a little farther.  So I got 3 more bags yesterday.  I’m low on magnesium as well only they can’t really replenish it because I’m allergic to the solution they use.  That’s MCAS life for ya!

I’m very grateful to be home from the hospital with a reliable feeding tube!  I’m hoping soon this J tube will be healed and the pain will leave.  At least I can get formula every day and I don’t have to starve for weeks waiting to get my tube put back in place!

Thank you so much for your prayers and support throughout this difficult journey!

Life continues....

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Thoughts & Well Wishes

Jenna Fowler | Apr 29, 2016
Hi Allison

Hi and ur family My name is Jenna and I came across your page..Where are you from? i am from BC Canda. You are a miracle, and you are full of smiles and laughter. U are a hero to everyone who meets and knows you. U are a brave warrior smilen champ couarageous inspriation, a super hero with super powers , a tough cookie, strong trooper and determined fighter. I wish u all the best, and send my prayers, and positive vibes to u and your family If you have a facebook page and would like to me to share it on mine I will If not I totally understand.  Maybe we can do share for share.
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