Presentation on theme: " As an infant I was a frequent flyer at the Toronto Hospital for Sick Children, to be treated for numerous ailments i.e. hernia repairs, ear infections,"— Presentation transcript:
As an infant I was a frequent flyer at the Toronto Hospital for Sick Children, to be treated for numerous ailments i.e. hernia repairs, ear infections, bladder surgery, gastric reflux(throwing up after every meal). At the age of 18 months on a routine chest x-ray the radiologist reported a spinal deformity. This led to more x-rays and a referral to a genetic metabolic specialist. At age 2 I was finally diagnosed with MPS VI.
I am being followed annually by: Genetic Metabolic Specialist Orthopedic Surgeon Ophthalmologist Every 6 months and as necessary: ENT (Ear Nose and Throat) Surgeon ENT Doctor Dr. Joe Clarke (Genetic Metabolic Specialist) Is my overseer in Toronto
Up to 2001(age 20), I have had 3 hernia repairs, several tubes in my eardrums, tonsils and adenoid surgery and bladder surgery. Since 2002 I have had: Decompression of the spine/neck Heart surgery for a apical aneurysm Double total hip replacements Because of difficult intubation with these major surgeries, I now have a permanent tracheotomy.
Vision impairment due to corneal clouding and farsightedness. Frequent ear infections, with some hearing loss. Joint stiffness Shortness of breath with moderate activity (i.e. climbing stairs, running and brisk walking) Migraines If my symptoms get worse, I visit my Dr’s. I am not taking Naglazyme and I haven’t had a BMT. We did apply for funding for Naglazyme. Just last week we found out the Government denied funding. We are in the process of appealing.
Because people have difficulty understanding my speech, I have my parents or sister explain to them what MPS VI is. I also have an essay that my sister wrote about MPS and MPS VI that I show them.
My Genetic Metabolic Dr keeps myself and family well informed, If we have any questions or concerns we contact him. My mom who is an RN (Registered Nurse) monitors my health as well.