Sunday, October 21, 2012

A Family Affair: Inherited Diseases



Photo:  A family picnic (prior to the birth of younger sister, Debra):  Father - Norman, Mother - Frances, twins Melanie and Melodie and brother Gerald:  photo 1950 (?)
(please excuse errors in spelling and grammar as the author is visually compromized)

During a recent family and friend gathering, I took time out to have a chat with my brother, Gerald (brother) who is approx. 11 months older than myself now 65 years young (and late twin).  An individual within the group  asked why does the surname "Elliott" come to the front anytime the issue of disability comes up?

I pondered a moment, and tried to explain (with my brother's help) that through adversity we have had opportunities to deal with tradgy beyond that of most families.  The friend asking the question seemed content with that response however when the friend was out of hearing range, Gerald (Gerry) and I remained engaged in the subject.

Gerry is a very private individual and speaks little of barriers that come with personal adversity.  On that particular occasion, howeve,r he broke his silence and openly described "a day in the life of Gerry".  He has silently struggled with Tourette's Disease and more recently symptoms of Becker's Muscular Dystrophy.  Gilbert's Disease (liver disease) also has presented itself.  Further into the conversation we recognized that we had not exchanged notes regarding family genetic-related disorders.  The information that came forth was astounding to both of us.
tragedy
Gerald's genetic defects points out that he has:
- Tourette's Disease - Grandson is now struggling with difficulties within the Autistic Spectrum
      (these two diseases are classified within the same category).
- Becker's Muscular Dystrophy and in five short years is wheelchair dependent,
- Gilbert's Disease, and
- Myopia (present in all family members)

Melodie and myself (Melanie) added a few to the pool as well:
- Osteoporosis
- Von Willibrand's Disease (blood clotting disorder)
- Heart Disease
- Aplastic Anemia
- Neurosensory hearing impairment
- Hyperextension of joints
(Melodie passed away six years ago from heart failure.  Melanie remains wheelchair dependent and with cognitive deficits from a non-inherited disease, namely an accidental exposure to an aerial sprayed chemical on a corn crop - this incident has left her with on-going neurological limitations including reduced blood flow within the brain)

- Dwarfism - experienced by an Aunt (sister to Father) has not resurfaced in my (Melanie's) generation and we can only pray that it will not appear in future generations.

Ironically, our younger sister, by eight years, has excaped all of the above.  One would wonder what was in the environment in the two-year span that caused multiple faulty genetic outcomes to rise to the top  (namely, in the two-year period in which Gerald, Melanie and Melodie were conceived).

Also, it is an auspicious coincidence that out of four siblings only a male sibling managed to give life to three exceptional children.  When I consider the more current picture (Gerald's children) - one son has Tourette's Disease and from my research,  the genetic component goes back on my Father's side.  Gerry's oldest Grandson now struggles with a neurological disorder within the Autistic Spectrum..... a disease that is included in the same category as Torette's Diseae.  The Von Willibrand's Disease was discovered in the late 1970's and has been the most distructive -- Melodie having been permanent paralysed due to the characteristics of this disease at the time of a fracture of her spine at the level of her neck.  Grandfather, Forrester Faulkenham, Mother - Frances, Melanie, Melodie and Heather (daughter of Gerald) have experienced intense hemorrhages from this disease.




a generation of Elliott siblings - Melanie,  Debra - back, Gerald, Melodie - front
The Elliott household approx. 1966:  Gerald, Mother - Frances and Father, Norman, Debra, Melodie, Melanie
Gerald Elliott's immediate Family

 As a Health Information Manager, I have a  personal interest in the genetic history of my family.  Considering my own family's tragedies I have gained an interest in genealogy only to find that there are inter-marriages in my background.  This (and likely other influences) would account to the abundance of inherited disease that is of my family history.  
 I suspect these inter-marriages, in part, were due to the assumption that as a Faulkenham (Mother's maiden name) by a different spelling...would give reason for two indiviuduals not to be concerned that an inter-marriage would be a subject of contracversy.,  There are 28 different spellings of Faulkenham and my search spells out that all are ancestors with varied spelling of the same Christian Carl Falckenheyn, a "Founding Father" of  Nova Scotia in 1752.
It is my wish that Health Information Managers will support the need of identifying and disclosing inherited disease particularly when a "family tree" is constructed and registered in an archival setting -- "Information is powerlful" 
....Nightingale


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