Candace Strong

Hello everyone! 

Let me tell you about my sister in law, Candace Sullivan, and what an AMAZING person she is! Not ONE person can say anything bad about her.  She is one the most caring, sensitive, and selfless people I have ever met!

Candace was diagnosed with a very rare life threatening blood disorder after she gave birth to her daughter, my niece, Dakota. 

She was diagnosed with Postpartum Acquired Hemophilia A. It is so rare, less than 1 person out of 1,000,000 million people are diagnosed. 

This has been SO extrememly hard on her.  Not only is she in extreme pain most of the time as her own body is attacking itself, her biggest hardship is that she can't be home, enjoying the experiences of a new mother to her daughter.

Without hesitation our family and friends have come together to give Dakota the care she needs while Candace is at the hospital and while Tommy, her husband and my brother, are at work or keeping Candace company.  They are a one income family with an overwhelming amount of medical bills that will be coming in VERY SHORTLY and continue to pile up, and I would love to help ease the burdens they currently face.

So far she has been in Morristown Memorial hospital and is currently in Newark Beth Israel Hospital Hemophilia Treatment Center. She has already undergone extensive tests and procedures. The main focus is to control bleeding as her blood does not have the ability to clot, and to destroy the inhibitor which is responsible for attacking her clotting factors. Her clotting factor is at level 5, and the normal range is 60-200. She is receiving very expensive medications and infusions, every 6 hours to stop and slow the bleeding, which she will continue to receive until this inhibitor is eradicated. 

Please know that every word, every prayer, every call, every share, makes a difference. You make a difference! Every donation, of any size, helps Candace, Tommy, and Dakota!

Please have it in your heart to SHARE, to PRAY, to REACH OUT, to GIVE, to ENCOURAGE, SUPPORT, and LOVE Candace, Tommy and Dakota!

This is straight from Candace:

On Sunday, Labor Day Weekend, 9/3/17, I took a fall at my house. This is no surprise to any of you I am sure, because we all know how graceful I am. ☺️It was this fall, that brought me into Morristown Hospital the following Wednesday evening. I did not break any bones, or even skin with this fall, but I had massive internal bleeding in my left leg and my right arm. From Sunday to Wednesday, everything in my body changed so quickly… and I was visibly bleeding into my own tissues, at an alarming rate, and I was in excruciating pain. I didn’t understand, I had x-rays done that very morning with an orthopedic surgeon, there were no broken bones, or skin, what was happening?!

When I arrived at Morristown, it was as if I was in the TV show, “House.” Multiple doctors and teams trying to assess what was happening. My previous/current medical history: I have Rheumatoid Arthritis and I am about 10 weeks postpartum. No history or family history of bleeding disorders… and oh my leg!!! I was in so much pain!! There was so much pressure, it felt like it was going to be explode! There is no other way to describe it. Multiple tests- scans- Dopplers - blood transfusions – transfusions of so many kinds – so many doctors!! – risk of compartment syndrome in my leg, is it a blood clot? It’s not a blood clot. CHAOS, confusion, and pain. Thankfully Morristown was able to identify a diagnosis… and the timing which they did, honestly could have been the difference between life and death. The care that they implemented could have been the difference between life and death. So thankful to them. ❤️

The Diagnosis: Postpartum Acquired Hemophilia A.

This extremely rare hemorrhagic disorder is caused by the development of autoantibodies directed against the coagulation factor VIII (FVIII). It is diagnosed in less than 1 person out of 1,000,000 people.

In lament’s terms, I am really special! My body changed after delivery; my immune system started to produce antibodies, and those antibodies are mistakenly attacking my healthy tissue, my proteins needed for clotting.  We all know I should walk around in bubble wrap to begin with!! ‍♀️

The management of AHA requires a two-pronged, parallel approach: 1) control bleeding and 2) eradicate the inhibitor. I have a large hematoma in my leg and a ruptured bakers cyst which is compressing my muscle’s in my leg. Under normal circumstances, a cyst could be drained but for me nothing invasive can be done, or I risk losing a limb, or even worse.

So don’t be afraid to open the door for this girl when she finally gets moving in a walker!!! Or the fact that I look like real life – no joke - a zombie from the walking dead. ‍♀️

At Morristown, they started treating me with immunosuppressive treatment in addition to blood transfusions. The hematologists at Morristown did everything they could for me there, but ultimately I needed to be transferred to a Hemophilia Treatment Center. In a way I was a spectacle, and I was told by more than 1 doctor, that they have read about what I have in literature, but have never actually met/treated someone with it. I was informed by another doctor that he had seen this in 1 or 2 patients in the last 10 years.

We called the 4 treatment centers in NJ. RWJ, another HTC informed us that they had treated someone with my diagnosis before, but on average about 1-2 people per year. Beth Israel greeted me with a team of doctor’s at midnight last Friday. New treatment has since been started and I will need at least 4 rounds of it. 

The hardest part about all of this, is not having my little girl, Dakota. I feel as though she is growing right before my eyes, and I don’t get to see or experience that like I should. My heart breaks for the fact that I can no longer nurse her. I LOVED that bond – that calm and love that I provided for her – that need that she has for me, her mommy. I stare at her pictures and rewatch her videos every day, and you know they grow so quickly. It is just the HARDEST part about this.
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Organizer and beneficiary

Krista David Rowland 
Jefferson Township, NJ
Candace Sullivan 
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