The story of Cheryl
Cheryl Todd (Mom of daughters with rare diseases), Ontario, Canada
Laura Todd (28 yrs .old) – Idiopathic Intracranial Hypertension
Lyndsey Todd (26 yrs .old)- Degos Disease
Laura (IIH) has struggled with migraine headaches which include aura, tingling and numbness of her fingers, toes, arms and legs, and face for many years. Numerous times she even blacked out. She then started to notice visual disturbances. Upon visiting a 3rd neurologist she was sent for an MRI and a spinal tap. She was also sent to an ophthalmologist who in turn noticed the swollen optic nerves and referred her immediately to a neuro-ophthamologist . Through all this testing it was found that Laura had excessive fluid around her brain and spine. She was diagnosed with Idiopathic Intracranial Hypertension in January of 2013. Laura is currently taking Diamox which has helped eliminate the swollen optic nerves but she continues to struggle with headaches and neck/back pain, etc. Laura is thankful that the neurologist recognized the symptoms and sent her for thorough testing. Laura sees the neuro-ophthamologist and neurologist on a regular basis to help monitor her IHH.
Lyndsey (Degos Disease) noticed she had some unusual bumps on her hands/arm/legs. The centre of these bumps would eventually dry and turn white. They never went away. Various creams were tried with no success. The doctors were not quite sure what it was. They did blood work and a couple of biopsies which came back inconclusive. They at first thought she may have lupus. Upon seeing another dermatologist in June 2013 he diagnosed Lyndsey with Degos disease. Needless to say it was quite a shock to read on the internet what Degos disease is. Degos disease can be contained to the skin but it may also become systemic affecting the gut, central nervous system & eyes. Like Brian, we too would like to thank Judith and Alan Calder for their time and effort putting together the Degos website along with the doctors in Germany. They have all been such tremendous support. Lyndsey now has numerous kind and caring doctors on board monitoring her Degos disease and a wonderful doctor from the U.S. whom helps her doctors oversee her care.
Both Laura and Lyndsey are determined not to let their diseases take over their life. They continue to work hard and carry on with their lives. They very seldom complain. Love you and are so proud of you both!
I would like to say that being the mom of two daughters with rare diseases has been very heart wrenching at times. The diagnosis of a rare disease is very devastating and shocking. It puts you on an emotional roller coaster at times and fear & tears can sometimes take over. As a parent it can be quite frustrating when you can’t fix it or make it all better. You feel frustrated at times that your urgency isn’t everyone else’s urgency. I now have a better understanding of the struggles people afflicted with a rare disease go through. I will continue to research and learn as much as I can about these two rare diseases not only for my daughters but for others also affected by disease.
Thanks to everyone (doctors included) who have been there for us to help us get through the physical and emotional struggles associated with having a rare disease. We don’t know where we would be without you.