McLeod syndrome

Neuroacanthocytosis has came into my life uninvited. One son has been told he has this the other has not yet been diagnosed but it seem like he has it.

Written by yddib, published 6 months ago.

I do not understand this illness. There is supposed to be only 150 people in the world that have it and that scares me because everyone knows the fewer people that have it the less research.

I have 2 sons that are unwell. One son is worse than the other but each will have the same outcome. One son has been told he has McLeod syndrome the other has yet to be told the final diagnosis, but the two of them have Parkinson like symptoms.

I just do not know where to turn to for help, one is 29 and the other is 27 but they have had their illness from they were about 8 to 10 but they did not know until their late teen years.

Written by yddib, published 6 months ago.

5 comments for «McLeod syndrome»

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  • gingerirvine | published over 3 years ago | Originally written in English

    Our Advocacy group is here to support and try to help you- we are sorry your two sons have this cloud over them. Maybe you could tell us more about yourself and your family - where are you located? Do you have a private email address? We are an American family who live in London- our daughter Alex is 43 and has chorea-acanthocytosis. Our Advocacy works with researchers who are working on projects which look for causes of both these NA diseases. Please write to us again- you can use either [email protected] or [email protected] - Thank you

  • louise_d | published over 3 years ago | Originally written in English

    Welcome to the NA community. I hope you will find it supportive and informative, especially in view of the fact that the syndromes are so rare. On the Advocacy website (www.naadvocacy.org) you will find newsletters with contributions from patients/families too. Best wishes to you and your family.

  • philnugent | published over 2 years ago | Originally written in English

    Hi yddib I am another one of the 150. I don't know how much you know about McLeod,when I got the news that I had it,after 30 yrs of of don't knows and dozens of different tests.I was straight on to google which threw this up www.ghr.nlm.nih.gov It gives a little bit of info....I think you are right when you say because it is a rare condition not much research is done.Is there anything like it any other familly members,I have a brother and sister who are both in good health..asked all my aunts and uncles, nothing ..Take care Phil Nugent

  • lantonelli | published 11 months ago | Originally written in Italian

    My husband was diagnosed the McLeod's syndrome. This disease started with a neuroacanthocytosis diagnosed at the beginning of this year after hospitalisation for diagnostics. The doctors who are treating him say they have never had a similar case. We fight every day, he much more than me, also because he has days of great limitations and fatigue, with strong anxiety crises and depression. It would be of great help for me to understand if there are any specialised centres or at least more specialised than others.

    Thanks

    Laura Antonelli

    Notice: This text content has been translated automatically by a third-party service.

  • massimilianopasquini | published 4 months ago | Originally written in Italian

    Salve sono Massimiliano ho la neuroacantocitosi e sono in cura al besta di Milano dove mi hanno proposto di fare una operazione al cervello la Dbs attualmente mi mordo continuamente le labbra e l'interno delle guance causandomi ferite e dolore

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