Anyone that was stationed at Camp Lejuern NC?

My husband was stationed at Camp Lejuern NC in 76 and 77. 3 years ago he was diagnosed with Amyloidosis with stage 3 (now 4) kidney disease, heart problems (amyloidosis has damaged his heart) and he has the protein in his lungs. Jan 8, 2021 he had a bone marrow transplant and is now in remission. He was forced into retirement at the age of 64, had’t been sick before all of this. We are tying to prove that the Amyloidosis is from the tainted water at Camp Lejuern and get the VA to help. They only recognize 8 diseases from this tainted water. But I’m sure that because of the chemicals that were found in the water and the damage that was listed by these chemicals there are more than 8 diseases that should be covered. Amyloidosis is related to Multiple Myloma, one of the diseases listed by the VA, you would think that Amyloidosis would be in that group of diseases.
Guess I just needed to vent. Sad watching a strong man going through all of this without any help from the people we feel is the cause of all of this. I know that the Doctors say that they don’t really know what causes Amyloidosis, but think about it. Every disease has a cause.

I do agree, BUT, lining up cause vs effect can be very difficult. Often for every specialist there is to support your case, there’s another supporting the opposing view. As I’ve said to others before, with govt depts, they have set criteria with a tick box mentality. Tick the wrong box and you’re automatically disqualified. In some cases a medical advocate who is schooled in amyloidosis can assist, someone with the knowledge.

They do have medicos on such panels and as a general overview, they are knowledgeable in many areas. But when it comes to some rare conditions that knowledge is not as comprehensive as they may portray. Having a professional speak to such medicos can assist as they’re speaking from the same qualification level, so I’d recommend finding an advocate. We can provide the information ourselves but sometimes it can be seen as hearsay. An advocate can lessen that hearsay effect.

Hope it helps
Merl from the Modsupport Team

Hi Karin,
I am on the mailing list for Camp Lejeune and have localized amyloidosis. My mother became pregnant with me in 1956 while living on base but then daddy was transferred to Camp Pendleton three months before I was born. So my mother was drinking the water while pregnant with me. I am relatively healthy but have been living with psoriasis since the early 80’s and l I was diagnosed with psoriatic arthritis about 20 years ago. I am 65 now and have no idea if the water has anything to do with my current illnesses. I had also joined The Few, The Proud the Forgotten website www.tftptf.com several years ago and there was at least one man in there at that time who had amyloidosis. You may want to join that group as well. I am a member of pretty much every online amyloidosis group that exists and very few people have mentioned the water and wondered if there is a connection. If your husband had been in Vietnam then his AL could be linked to Agent Orange exposure. As it is, we will have a fight on our hands to get amyloidosis added to their list of presumptive diseases. I hope your husband continues to do well after his SCT. The good news is that there are a lot of available treatment options now should he relapse.

Paula

Thank you for the responds and support. I’m working with a guy from VVA and he is helping me to get letters from Dan’s (my husband) doctors supporting the claim of the Amyloidosis coming from the water. I will make sure that all of the correct boxes are checked. But as a side note, Dan got a call from University of Michigan, where he got his bone marrow transplant, they received a packet from the VA that said that the forms checked needed to be filled out. The kicker is A) no forms were checked and B) it came to them after the decision had been made by the VA. So I’m working with the Doctors there also to get help with this claim.
Again, thank you for taking the time to respond.