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  • No Longer a Lonely, Rare Disease; ALS Finds Strength in a New Community

    Posted by Dagmar on June 18, 2019 at 7:15 am

    If we pALS (people with ALS) think we’re the only ones living with a rare disease, we need to change our perspective.

    An estimated 25 to 30 million Americans are living with a rare disease — that’s roughly the same number as those with type 2 diabetes or, 8 percent of the population. But rare diseases are often invisible diseases, and patients are frequently misdiagnosed and underdiagnosed. In a February 2019 interview with BioNews Services, Ari Zimran, MD, director of the Gaucher Clinic at Jerusalem’s Shaare Zedek Medical Center, said that “Only 5 percent of the 7,000 known rare diseases have effective treatments …”

    Fortunately, rare disease communities have discovered their strength by joining together for advocacy, funding, and shared research.

    Are you aware of the Rare Disease Community? Have you read recent articles about their initiatives? Do you think ALS will benefit by becoming part of a greater whole – – or should we stay seperate?

    john-russell replied 4 years, 8 months ago 2 Members · 3 Replies
  • 3 Replies
  • john-russell

    June 25, 2019 at 8:10 pm

    Glad for the attention but I wonder if bundling ALS with all rare disease will help. Where I live ALS doesn’t seem so rare. I’m pretty sure I have lost more friends & aquaintences to ALS than cancer. For me, the realization began in 2012 (no idea in 2 yrs. I would get my diagnosis) with a local fundraiser “Raising Hope” begun in the name of a friend and local entrepreneur, Roger. He died in 2018, after which an event was held to raise more $ in his name. Black T shirts were displayed with the names of local victims and they were legion. Before me a good friend’s partner was diagnosed and has since passed, then a coworker, Richard. 2 yrs after me my neighbor (.8 MI away on my road), Norm, was diagnosed and survived only 1 yr. A friend of my wife is now diagnosed another of my coworkers’ sister, Barbara, is with hospice. I have heard of numerous others nearby. Last week, I had a cardiologist apt. as I have begun experienceing resting pulses in high 30’s to mid 40’s. I called to be sure I knew where to park and the easiest walk to the office explaining I had ALS. The receptionist immediately responded that her mother had recently been diagnosed. I could drone on but the point is for me ALS dosen’t seem rare.

  • Dagmar

    June 26, 2019 at 12:27 pm

    John, I am amazed at the high incidence of ALS within your particular community/area! Either the local doctors are getting better at diagnosing, they are mis-diagnosing other conditions as being ALS, or, there is a valid reason why someone should investigate possible exposure or other sources of the high localized incidence.

    In all of southwestern Arizona, there are probably 50 ALS patients; and most of us have moved here from other parts of the country. In my town of 30,000 – – I am the only one.

    So, I fully understand why from your perspective, ALS is not rare at all! I wonder what the local ALS Assoc. Care Coordinator would say if you brought up the topic of the high incidence of ALS in your area?

    On another but related note: I’ll bet the pALS diagnosed in your area were not all athletes, in the military or had a head injury – – as the current media likes to portray as possible causes of ALS. Makes one think, doesn’t it? 🙂

  • john-russell

    June 27, 2019 at 8:57 am

    Hi Dagmar,

    The pALS I know and know of cover most of the spectrum of humanity, not just vets or athletes. The only thing I will say is I don’t know of any young pALS. everyone is 50 +. I was diagnosed at 69.

    Plattsburgh is on the shores of Lake Champlain which is not the pristine Lake everyone thinks of. Since the 1800′ coal barges plied the lake and left coal on the bottom at each offload. Plattsburgh was the biggest terminal. Just within the city was a coal gasification plant which operated on the Saranac River from 1896 to the mid 1960’s. Efforts at remediation of the site have been on going for over 10 yrs.  We were home to a SAC base through the entire cold war. Jet fuel was dumped over the lake often to lighten planes for landing. Solvents such as penetone were used for cleaning planes and parts of the airfield were declared a Super Fund site.  We have always had paper mills on the shore at Plattsburgh and Ticonderoga. Sewage treatment in Lake communities has gone from nonexistent to abysimal. Farming along the shores is putting more and more ag chemicals in the lake. Cyanobacteria blooms (HABS) are becoming constant. Research is being done at UVM Burlington and Dartmouth Hitchcock hospitals. I have given blood hair and nail samples for this work. A documentary was produced for VT PBS. U might find “The Lake Effect” on line.  On Facebook U might find ” Our Lake Our Lives” which includes cyanobacteria research by Dr. Stromal from Dartmouth.

    I think all these diagnoses are accurate. Most are made by prominent neurologists at UVM Medical Center. Of course miss diagnosis is made at first by primary care Drs. I got rheumatoid arthritis and then spinal stenosis diagnosis before ALS. Barbara was first treated for Lyme disease.

    I believe chambers of commerce stifle dissemination of adverse health so as not to discourage development.

    One of my Drs stated that within a 90 mi radius of Plattsburgh, all neurological disease is above per capita expectation and ALS is off the charts.



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