Neuroacanthocytosis (NA) Community

Meet, discuss & support other patients or families living with Neuroacanthocytosis (NA). Contribute to topics, or just share what's on your mind

Looking for McLeod Syndrome patients & families

Anyone out there with MLS, or related to someone with MLS? I'm looking to connect, and share issues and concerns.

Hi joy..After approx 30 years of seeing several doctors and specialists,and under going dozens of different tests,both as in-patient and out patient I was introduced to Prof. Chinnery
It was then McLeod was first mentioned to me..however reading some of the posts and stories on this site I don't think it has got hold of me fully because my condition and problems
don't seem as bad as others..but having said that it still came as a shock to me and the family
It is progressively getting worse,thankfully slowly..I think the worst thing for me is my speech,
not being understood is so frustrating,but thinking about it the whole McLeod thing sucks.
Take care Phil.

I'm so sorry that you have McLeod's, Phil. I do not have it, but my husband does, and that means my daughters are carriers and my grandson may possible have it.

You are correct in that the progression is slow. I believe my husband had very early signs in his 30's, but McLeod's varying symptoms only revealed themselves over time, and he was in his mid-fifties before diagnosed. He does not have a speech issue, although his voice is kind of sing-songy. He also has a problem with his tongue when eating, but it isn't so bad at this point in time. What exactly is your speech issue?

Mark's brother has McLeod's as well.

Hang in there!

Me gustaría saber cosas sobre casos de familiares de ustedes que padezcan esta enfermeda. Mi madre lo tiene y me gustaría saber otros casos

To SoniaLuque: I don't know of any women who have it. Since it is x-linked, it is much, more common in males, although females carry it. What are you wanting to know about other cases? Signs and symptoms?

Se que en una mujer es raro ya que normalmente se ve en los hombres!!

We just found out that my 42 year old brother was diagnosed with MLS. We, as a family, are desperately seeking information and support.

Also looking for ways we can bring awareness to this rare disease, and how we can go about fundraising not only for our brother, but for the disease as a whole. Would love to connect.

Yo tambien puedo hablar y escribir en espanol, asi que si alguien prefiere comunicarse conmigo en espanol, bienvenido.