I have Alpha 1 so any updates on treatments would be of great interest please.

Hi. I live in Britain, West Yorkshire England just have been diagnosed with this. Irish family. Which is a high gene pool. My father , they got divorced after 2 years. I really don't know about. Scottish? It's a long story.

I have this also!

I was diagnosed 3/2023. I am ZZ and am now testing for double lung transplant. I am 54 and live in NC.

@CarolReidCA

5 ай бұрын

Best of luck. I hope it goes well if that's what you need.

@bouffant-girl

3 ай бұрын

My prayers are with you, Sister

Looking at the chart at 47:27 re: serum antitripsin levels with augmentation therapy, why would one not use an infusion pump to keep levels stable, instead of bringing them up, and having them drop significantly in just a few days? Is anyone working on an infusion pump for use in augmentation therapy? For Prolastin-C (or others)? Let's get treatments for this better, and find a cure.

33:28 Me, 31, a nonsmoking PI*MZ with nonexertive dyspnea who has to see a pneumologist at the hospital q,q

I am recently diagnosed, my Dr had an internet site open to explain it. I’m her second case in her entire career. I need to see a Dr with some experience, pulmonologist first? How do I find a pulmonologist with experience? Thank you.

@belindaparker9515

6 ай бұрын

Are you a member of AlphaNet? I have a care coordinator that calls me monthly. They have so many resources. I’m sure if you reached out they could find a great Dr for you. I’m in NC I’m and my Dr has recommended Duke University in Durham NC

@Kate98755

6 ай бұрын

@@belindaparker9515 I’m not, whatis alphanet? I’m trying to find a support group. My first appointment with a new provider is in 2 weeks, when I would like to start seeing specialists. Did you see a pulmonologist first? Hematologist first? I understand gastrointestinal Dr’s also treat this disease.

@bouffant-girl

3 ай бұрын

I am living in Pasadena California in an assisted living hospital; and I will be beginning treatment at City Of Hope! In spite of not receiving the appropriate treatment as young girl, I am still alive, and until recently full of energy. Have to undergo Augmentation therapy, reconstructive surgeries on my GenitoUrinary, and Female Reproductive Organ to stabilize my health as much as possible. I had a Lateral myocardial infarction this morning, and I prayed my way through it, and I was able to avoid muscle damage and arrhythmia. This was partially due to my taking 100 MG of Metoprolol Succinate daily for the last 13 years. Iwas back from the Emergency Department and back in my bed 9 hours later. The doctors will increase the dosage to 159 MG tomorrow, and I am currently confined to bed rest. Hopefully in the next few days, I will be able to get out of bed and use a wheelchair to participate in the activities in the Recreation room 😀 I have come really close to death at least 40 time s over the last 44 years. During the times when I was the sickest, I felt a peaceful detachment from my surroundings and I recovered each time, Praise God 👏 Much love and Hugs 🫂 And Kisses from Pasadena California! Xoxo