#tomkicksSINAM

Statin-induced necrotizing autoimmune myopathy (SINAM) Diagnosis

For those that know Tom & Sheri  Wheeler, they are the epitome of "life's punching bag" with their health.  Yet, they are always willing to help out where needed in other's lives .
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They each have had their share of medical emergencies and anomalies but Tom's current diagnosis is an exceptionally rare and dangerous one. SINAM is a devastating side effect of statin therapy that develops into proximal muscle weakness and marked elevated creatine phosphokinase.  SINAM affects approximately two statin users per million per year.

Tom has decades of civic services and countless hours as a fire fighter.  You see, Tom is a 43 year volunteer with the William Penn Fire Company and typically has the mental and physical strength to handle that responsibility.  During a call earlier this year, after getting suited up, Tom did not have the strength to step up into the fire truck.  He knew something was very wrong.

wmpennfire.com 
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 Unbelievably, Tom 
- lost over 50% of his muscle mass and strength
- endured multiple tests to rule out ALS, Muscular Dystrophy, and COVID-19
- had a moment where he had to perform the Heimlich on himself (punched himself in the chest) because he was not able to swallow
- had surgery to have a part of his thigh muscle removed to confirm a SINAM diagnosis
- finally found a specialist who understands SINAM and its treatment, but not until he endured too many doctor visits telling him to "just give it time"
- was told his condition may be permanent and a new way of life for him to endure the extreme lethargy.

Tom is currently undergoing IVIG infusion treatments, where he sits for 5 hours a day, for three consecutive days, during the home treatments.  He will need a total of three rounds of this treatment.  He is just hoping that it will help get him to some sort of normal.  The treatment is not proven and may take months to see a positive effect.  The side effects can vary for each person.  Tom has had low grade fevers, extreme headaches, and even lower energy levels from the treatments.  While waiting for the infusions to be effective, Tom goes to physical therapy to help regain the muscles he has lost.

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We all know that life still happens, regardless of health concerns.  COVID stopped everyone from working in the spring, but due to the SINAM, Tom has not been able to work for months.  The IVIG treatments cost hundreds of thousands of dollars.  Although insurance pays for most of it, there are still deductibles, copays, medication, etc.  Bills are piling up. 

While most statins are considered to be safe, Tom has suffered one of the most severe, and rare, reactions.  Not just muscle weakness, but his muscles are actually being destroyed.  Let's help Tom and Sheri ease some of life's blows.  Please donate what you can to help them get by during this difficult time.

The money raised will help to pay for Tom's unforeseen medical bills as well as the debt they have accumulated over the past months.  To help ensure that Tom & Sheri accept your donations (and not try to give them back to you), it is set up for deposits into my checking account and I will weekly distribute the funds in cash directly to them.

Tom and Sheri are friends and family members to so many.  I am happy to call them close friends of mine.

Donations

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  • Patricia Taggart 
    • $100 
    • 1 d
  • Joe Cheryl Chamberlain 
    • $100 
    • 3 d
  • Alicia (Kumbat) Barry 
    • $50 
    • 3 d
  • Oli Brighton 
    • $10 
    • 4 d
  • Sean Wheeler 
    • $500 
    • 4 d
See all

Organizer

Ray Mahon 
Organizer
Langhorne, PA
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