Undiagnosed Leukodystrophy Website

Hi my name is Darren, We live in the Chicago area and have a 4yr old daughter Sarah. She was given the title of undiagnosed Leukodystrophy in November 2005.

For those that have been to the ULF conferences the last 3 years you have probably met my family and I. I am currently in the process of creating an undiagnosed Leukodystrophy website ( http://www.undiagnosedleukodystrophy.org ) . I hope to have the website fully operational withing the next 3 - 4 weeks. I will be a source of information gathering and sharing, and will link to this discussion area. I also would like to create a support network throughout the country with support outings or gatherings or just others to be able to share your experiences and to be able to provide the answers, information or just talk.

Personally for my family it has been a long journey with lots of Hurdles, but most of all it has and still is a journey of smiles, happiness and the creation of lots of family memories that probably would have passed by unnoticed if it wasn't for Sarah's diagnosis.
We have made a lot of great friends that we can talk to, who know what you are going through, which for new families is a big deal. It's hard for families and friends to understand what you are going through. But trust me WE all know what you are going through and would love to share and be apart of helping.
I'm starting to ramble. Have a look at the website again it is http://www.undiagnosedleukodystrophy.org
bookmark it, share it with others and try and help me reach as many people as possible. As The ULF says
"You Are Not Alone", and you shouldn't be!!!!!

By VIVA
Posted September 28, 2008 at 2:47 pm

Hi!
I´m from Mexico City and I would love to share my 24
year experience. I am alone in Mexico as I have never
met people with Leukodystrophy. I had 2 boys with
unknown Leukodystrophy. I went to the ULF conference on 1990, and I met lovely people and Drs.
and scientists were lots of help. My older boy died 11
years ago at the age of 12 and my younger one died 2
years ago at the age of 17. They were very handicapped, they just could hear, they didn´t move
nor talk, nor see but were really happy kids and family and friends cared for them.
I want to keep in touch with you and others.
Thanks in advance and I am very happy to meet you and others.
Sylvia

By Sarina
Posted September 29, 2008 at 10:08 am

Hi , I Live in Copley Ohio, and have been un diagnoised with Leukodstropydystrophy since March of 2008 . I am 39 years old and have 6 children and unaware if I have passed this down to them because they can't test them when they don't know what kind of leukodystrophy I have. It is very hard to sit back and wait but some times thats Gods answer to us is to wait because he has a bigger plan or a better one.If theres any thing I can do please let me know I want to helpin any way. I want the word out there about Leukodystrophy so more people are aware of it. Your right family doesn't understand what you or I am going threw I' m so glad I can talk with other people that are going threw the same thing or simuilar thing. But god does know what were going threw too and we just have to trust and lean on Him and His Grace. Please let me know how I can help. God bless Sarina
.

By Sarina
Posted September 29, 2008 at 10:16 am

ViVA, I'm so sorry for the lost of your sons. I could not even imagine what you went threw as a mother of six my heart goes out to you. I pray my children do not inherit this disease from me. You will one day see you sons again and hold them in your arms. God is holding them in His arms now . There in the best hands. I will continue to pray for you . Thanks for being there for those of us that are going thew this know. God has a plan for you. God Bless you ! Gods Love Sarina

By VIVA
Posted September 29, 2008 at 5:11 pm

Sarina:
Thanks for your reply. I know my kids are in a very nice place and good hands. Yes it´s been hard not having them but God knows why he has them and not me.
Are you a carrier mother of a Leukodystrophy?
Well, I´d love to keep in touch with you and others.
Love
VIVA

By cjackson
Posted September 30, 2008 at 7:58 am

I would love to be apart of this!!! I live in Northern Virginia and I have a 19 month old daughter and it has been a long journey for her!! I would love to meet other people that are in the same boat as us to share stories, and finding, and just to relate to us!! I can't find anyone in my are like that so I am so excited to be apart of this!!

By Sarina
Posted September 30, 2008 at 10:06 am

Viva, No, I have leukodystrophy I not sure if that makes me a carrier or not I 'm new at all this. And really don't know enough about it yet. Would love to get some wisdom from you if you know . Thanks so much. God Bless ! Gods Love Sarina

By DarrenB
Posted September 30, 2008 at 10:22 am

Hi Sarina,
Have you been in touch with the ULF yet, They have information sheets with a list of things you should do to help diagnose leukodystrophy, They can also provide you with healthcare professionals who specialize with leukodystrophy so that you can be better informed.

Remember there is a reason for everything.

Darren

By Sarina
Posted September 30, 2008 at 1:57 pm

Darren, I have got some info from ULf but I didn't know they could locate a doctor in my area. I know God has a plan and it's not always what we want ,but He knows better then we do. We just have to trust. God bless Sarina I will be praying for you and your daughter Sarah and Family

By Sarina
Posted October 1, 2008 at 10:17 am

Yes, I have Had a MRI and they said I have wide spread defused abnormality involving myliniation,and abnormalsignal of white matter defusely And so on. I am being see at the Cleveland Clinic In Cleveland ,Ohio. But not being treated for symtoms yet. Just taking Norotin For nerve pain and musle relaxiers to try to sleep through the night. I'm also on arthritist med. to try to get pain releif. I am taking B12 myself hoping it will slow down the progression . I going to a new doctor at the Cleveland Clinic today hoping to get some where this time. He's a neuroligist. I just getting tired of going from doctor to doctor you know. But I sure it will work out in the long wrong so or later. How is Sarah Doing , and How are You doing? Good I hope . Does Sarah have any Brothers or Sister. I'm going to sign off for now I have to get ready for appt. Have a Blessed Day ! God Bless Saina

By Mick
Posted October 1, 2008 at 3:18 pm

My wife has adult onset leukodystrophy, also an undiagnosed leukodystrophy. we have formed a foundation to find a cure antle peek foundation, inc. we are working on a website but one thing we want to do is to get list of all folks who have undiagnosed leukos identified. Many leukos that have been identified have their own groups but those who are undiagnosed do not. there are many adults who have undiagnosed leukodystrophy. If you are one please send and email to mpeek@iquest.net and we can add you to the list. The more drs know there are many undiagnosed the more power we will have as a group. thanks for creating this website.

By VIVA
Posted October 3, 2008 at 8:07 pm

I know it´s difficult to go from DR. to DRs. and not beeing sure if you´re doing the correct thing or if they´re right at what they´re telling you, but be sure that all you are doing will take you to the correct road. When I started with the diagnosis of my kids, it was terrible to know they had a degenerative disease but not the exact leukodystrophy and without the real prognosis, so what we did was to take care of them with all our hearts, give them everything to be comfortable and live day by day. Although it was hard to see them fight, suffer, from pneumonias and making surgeries due to the degenaration, we knew they would live until they wanted to do so as long as
they were comfortable. We had great times with them and we really missed them a lot but also sure they are
having great time without any pain. We are so proud of them!!! They had all kind of test but never knew which kind of leuko. they had . So, what I can tell you is to have everything that makes you feel better, try to get to the definitive diagnosis and try all the latest in medicine, studies... Love VIVA

By Sarina
Posted October 4, 2008 at 5:37 pm

Thanks so much Viva, I apprectate your imput is very helpful to know there is great people like you out there willing to help others. It sounds like your boys had a great mom and dad that loved them very much and gave them a great life. God Bless You Both. Gods Love Sarina

By PinKSunshinE
Posted October 9, 2008 at 8:01 am

I feel blessed to have found others with an unknown type of leukodystrophy. It feels so lonely, like no one else understands. My daughter, Hope is 6 and has been through tons of testing, seen over 15 drs and been in two case studies with over 30 dr's present at each. Still we don't know the type of leukodystrophy she has. Since she doesn't have a diagnosis we don't know her progrosis. Although we know it is a fatal disease we have no idea how long she has and what twists and turns there will be along the way. Like others have said you just try to take each day and enjoy it to the fullest. I want to be able to look back and say that I wouldn't have done anything differently. My husband and I can say that now. We have a strong faith in God that has pulled us through and He will get us through the rest. We are blessed that Hope is a very happy girl and not in pain. On the hard days we focus on that, so many others are not as fortunate. I just wanted to introduce myself and say "thanks" for forming this group.

By mrb
Posted October 11, 2008 at 9:03 pm

Hello,
We have a 7 year old son who has an undiagnosed leukodystrophy. He is having a lot of recent behavior problems. Have any of you experienced odd behaviors and aggressiveness in your children?

Darren, I am looking forward to your website being operational!

Thank you for your help.

By marshallsaunt
Posted October 12, 2008 at 10:21 am

Hello mrb, I have a nephew that was recently diagnosed with Adrenoleukodystrophy. He has not started showing any symptoms but his doctor told my sister that the behavior problems was one of the first signs she should look out for. Im not saying that this is the kind of leukodystrophy your son has but its a start.

By crblock
Posted October 30, 2008 at 9:23 am

Hello Sarina,
We may have something in common. I am 65 and was just diagnosed a few months ago with leukoencephalopathy of unknown origin. I am not sure if that is the same as leukodystrophy. Do you know? The diagnosis was based on two MRI's, one in 1996 and the other in May of this year.
-- Carolyn Block

By Sarina
Posted October 30, 2008 at 2:24 pm

Hi Carolyn, I'm not sure if it's the same or not. I know my MRi revealed that I had wide spread abnormalality through out my white matter. Which there saying is Leukodystrophy Because Leuko means White and dystrophymeans abnormal growth or appearance. But all blood work so far as not diagnosed what kind yet. But , God knows and I hope I will one day. Let me know if you find out if there the same. Feel free to E-mail me at rlrsgr@yahoo.com

By crblock
Posted October 30, 2008 at 6:44 pm

Hi Sarina,
I just looked this up. According to the Oxford Desk Reference: Clinical Genetics (2005; Helen V. Firth, et al.), page 150,
"A leukodystrophy is a genetic condition affecting mainly the white matter of the brain. The term "leukoencephalopathy" is used to reflect the broader number of diseases that may cause either primary or secondary changes in myelin development. All leukodystrophies (by definition) have an underlying genetic or metabolic basis and a thorough metabolic workup is mandatory. Other causes of white matter disease have an environmental basis such as asphyxia and congenital infection (particularly cytomegalovirus (CMV)). Magnetic resonance imaging (MRI) brain scanning is an essential part of the diagnostic process and the pattern of white matter abnormality seen on MRI can be used to target further testing."
So now we know.
-- Becky

19 replies

Add to the discussion

Search

Join

Connect

You