Feedback from the regular readers of my previous blog Vv Musings, stated that people commonly showed interest in getting to know the person behind the posts.
Terminally Tough, is a new way for me to express myself through my writing and I am approaching this new chapter from a more open standpoint. Blogging has taught me many lessons and alters my perspectives on various subjects daily, to the point where I feel comfortable enough to share my identity more clearly with my readers.
“My name is Willow Lennard, I live in the UK and I am twenty five years old. I am the proudest mother and devoted to my better half, Anthony. If you had not already guessed, I am terminally ill. Terminally Tough is; my life, my story, in my words.”
As a child I was extremely accident prone, I had trouble sleeping, joint pain and at times, fatigue. I had a few surgeries throughout my childhood but these small issues increased with age and were at their worst during puberty, or so we thought. I became increasingly unwell through my late teens/early adulthood, I had recurring infections, increased fatigue, a weak immune system and caught swine flu. From that point on I never fully recovered. After fighting for years on end to get some diagnosis or a reason for my rapidly declining health, I was finally diagnosed at the age of twenty with Ehlers-Danlos Syndrome. EDS is a rare genetic disorder which causes all the symptoms I have previously mentioned, along side; multiple joint dislocations, organ rupture, joint instability, an overproduction of collagen, major soft tissue injuries, vitamin deficiencies, and inability to metabolise medications properly, intolerance and allergies to foods, medications, perfumes, certain materials etc.
To be quite honest, Ehlers-Danlos Syndrome is such a complex disorder that it affects 95% of my body. It is a genetic mutation, hard to diagnose, unknown by many primary care physicians and on the rare disease spectrum. This means that there is no cure, no treatment and in some cases can be progressive. Unfortunately for me, I have many illnesses directly related to and triggered by EDS. In total I have sixteen conditions that I battle with daily and my only lifeline is long-term pain management. There are roughly fourteen mutations of the EDS gene and I happen to have two of these active in my genetic make up. I live with Hypermobile EDS and Vascular EDS. More often than not vEDS kills its victims sooner rather than later.
During the summer of 2018 I was given a life expectancy. My specialist teams had a mini conference about my care, current condition and what my future may hold. Sadly, my health and stability has declined so rapidly over the last six years that my maximum life span is fifty years old. I will only make fifty if my body stops deteriorating, which they said is highly unlikely. As soon as I had digested this information, I made a conscious decision to start living my life with only one goal, being abundantly happy. With the love of my daughter, loyalty of Anthony and continued support from our nearest and dearest I am doing just that. I am lucky enough to have access to a phenomenal GP who goes above and beyond his call of duty to keep me as comfortable as possible so I can stay at home for as long as possible.
Terminally Tough™️ and all site content is owned by Willow Lennard. Original Photos and Media are Copyright of Willow Lennard 2019©
Photos or media featuring my children will not be posted. Some names have been changed to protect identities.