My niece Shae-Lyn Clarke was very active throughout her school years. She began dancing at the age of 3, went into figure skating for a few years, did musical theatre since Grade 9 and loved to draw and paint.  She graduated from the French Immersion program in 2017 and her plan was to take Criminology. She started out at the College of Penticton in the Fall of 2017 but just before starting the winter semester in January of 2018, she began to get sick.  She would wake up with severe abdominal pain and then start vomiting violently. These episodes would last for several hours and were happening about every 3 weeks but it would then take her a week to fully recover.  As these episodes continued the pain would magnify and she started throwing up blood as well and would become severely dehydrated because she couldn’t even keep water down. 

After being in and out of emergency and after having several tests done, she was finally diagnosed with Cyclic Vomiting Syndrome (CVS). CVS is a condition where you suffer from sudden repeated attacks of severe nausea, vomiting and exhaustion. These symptoms come with no apparent cause.  Each attack can last for a few hours or several days and for some people it’s a life time condition. Shae also suffers from abdominal migraines which triggers these episodes.  They also thoughts certain foods could be a trigger so she had food allergy tests done and it was found that she has a reaction to several foods so her diet has become very limited but it hasn't stopped the episodes.

Shae eventually had to drop out of college because her episodes were becoming very unpredictable and she could get one any time of the day or night.  She was spending more and more time in emergency and at times they wouldn’t have a bed for her or they didn’t want to free one up so she’d end up on the floor in the hallway hooked up to an IV to get pain meds and fluid.  Often times her electrolytes where also severely depleted because of the continual vomiting and not being able to absorb any of the nutrients in what she was eating.   Because so little is known about this disease, the emergency doctors and nurses would question Shae if she was on any drugs or thought she may be looking for drugs. Going to the hospital was always very very stressful for her and her parents Donna & Dean Clarke.

Trying to get help has proven difficult but luckily Shae has a wonderful GP who has been very supportive, she unfortunately doesn’t know much about this very difficult disease.  There is only 1 specialist in Canada in Ontario but he only deals with patients under the age of 18.  When Shae’s doctor contacted him, he wouldn’t offer any help because he doesn’t deal with adults.  This condition is more prevalent in children but more and more adults are being diagnosed with it.  

Shae started to have episodes every couple of days and since the end of March, the episodes have been daily. There are only a few hours in the day where she isn't in pain or throwing up.  When Covid-19 shut everything down,  Donna was given permission to start treating her at home because she is a nurse but it meant that she had to take an unpaid indefinite leave of absence from her job as a NICU nurse at Kelowna hospital.  Shae also had to get a PICC line inserted because her veins are so damaged now. She ended up in hospital in August a couple of times because the episodes got so severe that she couldn't stop throwing up.  They  have tried so many different pain meds and other medications to help get this under control but nothing is working.  She also now has to get iron infusions but they also make her sick. She's also seeing a Gastroenterologist who suspects she has Crones but she is to sick right now to have a colonoscopy. 

There are 2 specialists in the United States and Shae-Lyn's doctor has been in touch with both of them.  Unfortunately the one specialist wanted to see Shae in person but that's not possible.  They are now working with Dr Boles from California who is a leading specialist in dealing with CVS in adults.  They are doing a Mitochondrial DNA test which will hopefully give them a possible cause. The causes and frequency of the attacks can vary greatly between patients and the hope is that this DNA test can give those answers and a treatment plan for Shae to put her into remission.  Dr Boles initial consultation fee is $1000  and they're not sure what his costs will be after that when he consults with Shae's doctor. The DNA test is $5000 and Shae's bloodwork is sent to a lab in the States that does this kind of testing because there are no facilities here in Canada.  They are also not sure what the costs will be once they have a treatment plan.  Right now there are medications that Shae is on that aren't covered by Donna's plan.  They have looked into whether any of these cost would/could be covered but because the treatment isn't being done here in Canada, the answer was no, even though there are no specialist here in Canada.  

Shae-Lyn is only 20 years old but her life has been on hold for almost 3 years now She used to be a happy girl who loved to spend time with her friends and family but her life now is either in a hospital room or her bedroom hooked up to an IV and throwing up and in pain for sometimes hours on end.  I realize that so many are going through difficult times right now  and not everyone is in a financial position to donate so  a simple like or share would really help.  Thank you for taking the time to read Shae's story.