Replied by Prioris (Fl, US) on 10/08/2014

I don't understand the disease enough to give really sound advice but I will try anyway.

I don't know the specifics of your situation. You said you were very sick from the health condition so I have to approach this generically.

Understanding the underlying genetic impairment and whether there is something that can be done nutrition wise requires more expertise.

If one looks at impaired sulfur metabolism resulting in toxic sulfites, that can involve some impaired genetics. there are many suggestions on how to improve the metabolism of sulfur because there are a lot of people with that condition. You have a rare condition so a lot less people involved with that.

I did read this on wiki

"The risk of an ALPS patient developing Hodgkin lymphoma (HL) is estimated at 50 times that of the general population, and the risk of NHL is increased 14-fold in them."

This seems to put you at high risk for this cancer.

This brings up the subject of chemo and radiation therapy. I would look into the following if you ever get cancer.

cancertutor.org has a section on lymphomas

There are also alternative health consultants who may be able to help.

http://www.mercola.com/article/cancer/cancer_options.htm

It is not easy to recommend alternative treatment for your named condition simply because it is a rare condition.

The way I would approach this would be look at the things your at high risk for and look at things that help lessen the odds to mitigate them. Lymphoma is not rare so there will be a lot of people who have collected their experience. Same goes with any other medical condition you are at rodk for or presently experiencing.

So I would look at things like ...

"people who have higher intakes of vitamin K in their diet have a 45% lower risk of developing Non-Hodgkin lymphoma."

I would look at Earth Clinics Lymphoma section for additional supplements. There is a lot of valuable info there.

You want to be proactive if you can to prevent the cancer or any other medical condition it puts you at risk for. I would approach it that way rather than from a "rare" disease point of view.

I know it is difficult to study things when you are sick but you may have no choice.