This has been a difficult period for Lovina Eicher and her family with what just seems like a parade of pain over the past year from illnesses and house fires to the Muscular Dystrophy diagnosis for two of her daughters. Â And there's no guarantee more of her children won't get it, which hangs over everything. Â I'd say her oldest, Elizabeth and Susan, are likely out of danger.
Right now Loretta is clearly the one getting the worst of it as her condition seems to be worsening with surprising speed. Â It's probable that both Verena and Loretta will be confined to a wheelchair by the time they are 20 or 25. Â This type of MD is especially prevalent among the Amish of northern Indiana. We are now pretty certain that Lovina and Joe Eicher are both carriers of the recessive gene that unleashes the disease.
Here is a Q & A I conducted with one of the premiere experts about this disease.
Welcome to amishcookonline to Jerry Mendell! He has a long list of credentials:
1) Â Q: In layman's terms what is Limb-Girdle MD and how does 2A differ from other types?
 Dr. Mendell: It is important to understand that LGMD is a confusing term that has a historical basis. At one time back in the 1950s there were only a few dystrophies known and everything that was not Duchenne, FSHD, or myotonic was labeled LGMD.  As we matured scientifically of course many other muscle diseases were discovered and this includes many of the diseases labeled LGMD.  So distinguish the LGMDS numbers and letters were put on the conditions in the order that the disease was linked to a chromosome or gene.  Although LGMD implies that the 14 or so different types are somehow related that is a mistaken concept. They are all different and for example LGMD2A has nothing to do with LGMD2B, etc. There are overlapping clinical signs between LGMDs but that is true for many muscle diseases.
 2)  Q: What is the long term prognosis for someone with limb-girdle?
Dr. Mendell: Again, here is the temptation to lump the diseases together. Â The prognosis and time of onset is disease related. Â LGMD2A has a relatively good prognosis for prolonged ambulation and maintaining breathing capacity. Â Many patents will be wheelchair dependent late in the disease process after 15 or more years.
3) Â Q: Are there any promising treatments on the horizon?
Dr. Mendell: For all of the LGMDs we believe that gene replacement therapy is the most promising method of treatment on the horizon. Â For LGMD2D, we have had particular success and at some point we will apply these principles to LGMD2A.
4) Â Why are the Amish seemingly especially vulnerable to this type of MD?
Dr. Mendell: LGMD2A is inherited as autosomal recessive disease meaning that both parents must carry the gene to pass it on to their offspring. Â Because the Amish are often closely related, it is more likely that individuals marry who are carrying a similar gene makeup.
5) Â Q: Any websites people can go to to learn more?
Fortunately there is an organization devoted specifically to research for LGMD2A or Calpain deficiency. Â It is known as Coalition to Cure Calpain 3. Â
debbie waltz
i have MS was was going down fast -i did nit want to be in a wheelchair and so i tried homeopathy- locate a dr. in michigan that treats with homeopathic remedies and maybe it will slow down the disease to a wheelchair-i have kept myself out of a wheelchair for 21 years. please look into it for the family kevin. take care, debbie
Guri
Debbie
Can you please share name of your homeopathy doctor. I need to consult with him
Kathleen Davis
Is it possible that stem cell could either cure or help MD. Also with the Jerry Lewis program I have heard that is a cure in the not far future. What does the medical field know about these.
Diane Adelstone
I honestly believe that there is something they can do now. Why do these researchers always want to wait for the future when there is hope now. It isn't going to hurt to apply what technology they have here in the present for these conditions. Adult stem cell technology in my opinion should be tried now!
Carole Cotler
Hi Lovina, I know just what you're going through. I raised two sons with Muscular Dystrophy. In addition my mother-in-law was one of the founders of the Muscular Dystrophy Association in the 1950's. I would love to compare experiences. My blog is: http://askmrsc.wordpress.com
I am in the first draft stage of writing my biography "Hope for a Miracle." My business partner Linda Collins and I are also creating webinars that will help others adjust their homes to accommodate canes, crutches, walkers and wheelchairs. The webinars will be available through my business website http://www.specialneedshomeconsultants.org early in the fall.
Carole Cotler, Special Needs Home Consultants
Marilyn and LeRoy Stucky
We are so sorry to learn of your daughters having MD. We are not too familiar with that, but we are encouraged by knowing Jesus Christ as our Saviour, that He has made and created everyone in His own image, even though He allows sicknessness to enter our body. As the Bible says, "that we are fearfully and wonderfully made". Ps. 139.14
God knows each one of us intimately: "O LORD, You have searched me and known me. You know my sitting down and my rising up; You understand my thoughts afar off. You comprehend my path and lying down, and are acquainted with all my ways." vv. 1-3
Not only are we wonderfully made, but because of Christ's death on the cross, because we have all sinned, Romans 6:23, we can also be wonderfully restored to a right relationship with God."If anyone is in Christ, he is a new creation...All this is from God who reconciled us to Himself through Jesus Christ." God must have a special plan and life of
service that He wants to use through your daughters. May our Lord Jesus Christ be very near to all of you. In Christian love, M & L Stucky
Beth
I read in this week's paper about your daughters and thought you might be interested in a book that deals with genetic health problems called "Trace Your Genes to Health" by Dr. Chris Reading. He has shown that most diseases and health problems are related to food (mostly grain) allergies or B vitamin deficiencies. He tells of many people that he has been able to "cure" by identifying their allergies or lack of essential nutrients. His book does list MD as being associated with grain allergy. I hope this information helps.
Limt-Less Campaign
Please follow the guidelines of the Associated Press Stylebook
and use the phrase "wheelchair user" when referring to someone who uses a wheelchair as opposed to either "wheelchair-bound" or "confined to a wheelchair".
Thank you for your consideration.
The Limit-Less Campaign
msjvcu
I couldn't have said this better...thanks for reminding people that language is so important when describing anything related to disabilities.
Tricia
Is there any kind of fund to send a contribution for these girls and their future needs? Lovina Eicher has taken much time to share her culture, and some people may want to give something back.
Kevin
Tricia, sure...go here http://www.oasisnewsfeatures.com/eicher-fund/