Kristin Robinson

Dear Family and Friends,

During the last couple weeks in March, Kristin began experiencing numbness and tingling in her feet and legs. This sensation progressed to her tongue and nose, which spurred her to go to the emergency room. She was admitted to the hospital and began to undergo a variety of testing to get answers. 

On April 2nd, 2019, Kristin was diagnosed with Guillain-Barre Syndrome (GBS). GBS is a rare autoimmune condition, impacting fewer than 20,000 people each year. GBS symptoms can range from a mild case with brief weakness to severe cases, where the patients experience full paralysis. Typically, symptoms plateau after four weeks of the diagnosis and patients go on to make a full recovery.

After receiving the diagnosis, Kristin spent five days in the hospital receiving immunoglobulin therapy.  Her mobility improved and she was cleared to go home while continuing to  receive outpatient physical and occupational therapy. She was able to return to work with restrictions for a short time before her symptoms began to unexpectedly worsen again. 

Kristin returned to the hospital and was re-admitted on May 10th for additional consultation, observation, and testing. Within a day of this admission, Kristin was no longer able to walk, and use of her arms and hands was minimal. Following further tests, Kristin was given a new, final diagnosis of Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP). CIDP is a rare neurological disorder in which your immune system attacks your peripheral nervous system, destroying the myelin sheath that protects your nerve fibers. The result is progressive weakness and impaired sensory function in the legs and arms which impacts suffers' ability to function normally.

Once this new diagnosis was determined, Kristin received five days of IV steroids, which helped slow and even reverse some of the damage done by the most recent attack. Unfortunately, Kristin was specifically diagnosed with relapsing-remitting form of CIDP, meaning that, without ongoing treatment, this will most likely happen again. Kristin is now receiving weekly IV steroid infusions at The Infusion Center in BJC, and will continue to do so for the next three months. If she continues responding well to that, her doctor plans to try moving her to twice monthly infusions for another six months. The big goal is that she can handle the reduction without relapsing so that she can eventually be reduced to oral steroids, a big step that will be far less disruptive to living a normal life! 

At this point in time, Kristin is still not able to return to work. Kristin's first hospital stay lasted 8 days. Her second was also 8 days, followed by another week at The Rehab Institute of St. Louis, an intensive rehab facility. She is now back home, with movement primarily aided by a walker, but using a wheelchair for anything requiring walking or standing for longer than 10 minutes. She is continuing to go to PT and OT as an outpatient, where they are focusing on skills and endurance.

CIDP is interesting because of how it impacts nerve function. As the nerves repair themselves, Kristin is relearning to do things like type, walk, and write, but she can only do these things for short amounts of time before the nerves fatigue and "short circuit". When this happens, the nerves stop communicating properly with her brain and her motor skills deteriorate until she lets those nerves rest. With time, the nerves will continue to restore themselves and this fatigue should get better; but time is a variable Kristin can't control, and, if anyone knows Kristin, you know nothing is harder for her than not being able to control something. 

Kristin is a kind, giving, selfless person. She is passionate about helping others (as evidenced by her career working with students with significant functional and behavioral needs). On the flip side, she is not so great at accepting help from others; we are setting up this GoFundMe in her name with hopes that she can focus on her heath and recovery, rather than the financial impact that this diagnosis will have on her family.