Alport Syndrome ... Help please

I am looking for any information on Alport Syndrome from those more knowledgeable than me.

Any first hand knowledge would be greatly appreciated.

Does anyone know of any alternative medicine / treatments than can help.

All of the research I have studied says much the same thing.

My son is only 20 years old. I love him so please if you can offer any help, please do.

I have to go to a family conference with his doctor so .... it is not looking good. I am scared.

P

a reply to: pheonix358

I can only offer you a link, that might be helpful........

originally posted by: pheonix358
I am looking for any information on Alport Syndrome from those more knowledgeable than me.



Does anyone know of any alternative medicine / treatments than can help.

I am scared.

P

Scaring have no place in this game. Firstly we have to understand where this disorder comes from, thus finding its roots we could uproot it. I personally assume as much I could read about it, that the roots are deep in the family line. DNA problems are quite hard to be uprooted in one lifetime. Yet this does not mean for us to surrender. I will send you my advice on U2U.

Thank you both for your replies.

Much of what is available on-line is all of the same. Gene therapy looks promising but it is a possibility for the future and provides nothing for current sufferers.

P

a reply to: pheonix358

I wish you the strength to change what can be changed, to endure what must be endured, and the wisdom to understand which is which. I will keep your family in my prayers. It may not be much, but it's all I have to offer.

Kidney transplant looks to be a given at some point.

alportsyndrome.org...

a reply to: OccamsRazor04

Thank you. Yes it does look that way and they seem to give out after a while. He is only 20 years old. Typical son, he is trying to shield me from worrying. Life is so damn unfair.

P

a reply to: pheonix358

Kidney replacement in Alport sufferers is not a forgone conclusion. The problem with the syndrome, is that transplanting a normal kidney with normal collagen structures, into someone with the syndrome can see the kidney being rejected by the body of an Alport sufferer, because their body will recognise a kidney with normal collagen structures as inherently foreign.

Gene therapy, as you say, may provide some answers, and dialysis as well as other symptom focused treatments can mitigate for a certain amount of the symptoms in the meantime. I hope and pray that the situation regarding potential treatments of the condition at its root improves. In my thoughts, as always pheonix358.

Hi. I have it. It is inherited through the x gene from the female parent. I can discuss it completely, thoroughly inside out, up and down from start to finish. Probably have some good links and years of experience.

But I don't want to do it here. We'll have to take it to PM. My brother has it, of course. It manifests very differently in males than it does females. Females are essentially carriers, so your son got this from his mother, if it is truly Alports. The treatment is dialysis for short term and transplantation for the long haul. They have that down to an art form. He'll be fine, and it could be 10 more years before he even needs it, but if it's Alport's, he will need it. My father gave my brother a kidney, and he is fine other than some side-effects from the anti-rejection meds.

If you want to talk, I'm available.

My best,
liw

a reply to: pheonix358

Hi P

I can offer no advice but I'm here if you need to rant at somebody, you know me, I won't take offence and it might help to let out some anger/worries.

You've got my email and we can always talk or skype my friend, just give me a shout mate and then shout if you want to



Praying for you and yours P,

Cody

I'm happy to see people in here helping you Pheonix. My thoughts and prayers are with you and your Son.

a reply to: pheonix358

Pheonix your last sentence rings true! AT least know that those here with no help on the technical side of this issue, have your back as far as 'being there' to help with a shoulder and an ear. Myself included! I wish You and yours best of good luck throughout this ordeal. Syx...

a reply to: pheonix358

I am so sorry I have no information for you Pheonix, I feel for you. I cannot imagine how you are feeling. Please keep us informed about his progress.

Wish I had more for you mate but we are all here for you! Best wishes for the family!

a reply to: pheonix358

Hi pheonix,

Just popped in to see whats going on and saw this thread.

I am so sorry to hear of your son being ill. I have two of my own at this age. I know the fear of not being able to fix something that is wrong.

I have never heard of Alport Syndrome. Read aliitle about it through the links.

My heart is with you. You are in my prayers.

Crappiekat

Thank you all.

P