How Did You Tell an Elderly Family Member About MLD?

By carolrn
Posted July 24, 2008 at 10:14 pm · 3 replies
In Family and friends

Our family has recently received the devastating news that our little "Abby" (my grand niece), 23 months old, has MLD and that this disease is degenerative and fatal. My mother, Abby's great grandmother, is almost 90 years old, and in relatively good shape but she had a brain tumor removed about 8 years ago which has left her with some mild motor and speech deficits. As a result, when she is nervous or anxious, her deficits become much worse.
We don't know if we should tell her the whole truth or just part of it. For instance, we could tell her only that Abby has this disease and that she probably will probably never walk on her own (she does not walk at this time - that was our first clue). That seems the most compassionate to me but I also know that sometimes facing the truth, no matter how painful, is the best in the long run.
To those of you who have already been in this situation, what do you think we should do? How did you handle this in your own families? We appreciate your sharing with us. It always helps to touch base with folks who have been there. Thanks!

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By revdocwlk
Posted July 25, 2008 at 2:47 pm

Hello!

I am Bill Kintner, ULF Vice-President for more than twenty years. Our daughter, Kristy, was diagnosed with MLD at age six, and died at age twenty-three in 2000, after a valiant battle with the disease for more than seventeen years. Here are some facts and suggestions for you in talking to an elderly family member about MLD:

Every person carries several (6 - 12 or more) defective genes. This is a natural occurence in creation. For the most part, it is usually not a problem. Many people carry the defective MLD gene.
However, when the biochemical defect is autosomal recessive, meaning both parents must be carriers of the defective gene, then there is a 25% chance that a child may be stricken with the illness. The incidence in live births with MLD is estimated to be about one in thirty thousand. Up until just recently, there were no live-saving therapies or procedures available to MLD patients. Now, some new possibilites for actual treatment are emerging.

I believe that older people are able to understand this simple explanation. There is always much more information available, of course.

The ULF family is both a tragic and elite society. We are here for those stricken with a variety of leukodystrophies and other white matter diseases, including MLD. There is hope, however!

For more than twenty-six years, the ULF has sponsored direct research and scientific inquiry with MLD. We were the first to bring researchers and physcian care-givers together with parents and family members in an annual scientific and support meeting. We have just concluded this year's event last week. The ULF also sponsors world focus meetings from time to time, as new information and new therapies emerge.

As has been announced for some time, a very special MLD world meeting will be held in DeKalb, Illinois, September 19 - 20, 2008. Registration and detailed information will appear on the ULF web site within a few days. ULF organizers have been at work for many months to bring the latest in research and patient care in MLD to you in this special MLD focus symposium.

I invite and encourage you to join us in DeKalb for this historic MLD meeting. You will gain much in both information and support from the experience.

Please do not hesitate to contact me personally, or anyone at the ULF, if we may be of assistance to you. We are here for YOU! Best wishes!

By revdocwlk
Posted July 25, 2008 at 3:00 pm

I need to also mention that a family will best know how to proceed in discussing a tragic illness such as MLD with a given family member. Personally, I think that as much information as is available could be shared. There will always be questions that can be answered. Some may not wish to have detailed explanations. Others may need to ponder and try to understand all available information. The parents of the child are those who need to determine what information is actually shared with any other people.

By carolrn
Posted July 26, 2008 at 1:05 pm

Thanks so much for your reply. I will send your response on to my nephew. I'll look for the news about the conference in Dekalb.

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