Hi everyone! Im writing in behalf of my nephew. We are living in the Philippines for context. He was diagnosed with Type B Hemophilia and his body is missing the Factor IX protein for clotting blood. Three weeks ago he had an accident and broke his lips. It was a small cut but it didn't stop bleeding. He was admitted to the hospital for blood plasma transfusion while his father went to Manila to get the only remaining Factor IX available. The protein was administered to my nephew and he was discharged after two days. Just after New Year the wound opened again and we was sent to the hospital once more. This time there was no Factor IX available anywhere. Their doctor tried to get a hold of one to no avail. Even the local Hemophilia organization couldn't help as there was no supply coming from abroad. He had already rejected the plasma transfusion so there was very little they could do at this point. He was sent home again and his parents are thinking of another plan. Im writing this with concern for my nephew. He's a two-year-old boy who's very energetic and playful. It is sad to see him often locked up inside their house, but what can they do? The tiniest bumps could lead to bruising for weeks, the slightest cut could bleed for weeks. I just want to know if we could get a hold of a factor IX from abroad in our own. This would be a very huge blessing if we could, and a relief to everyone taking care of him. We just have nowhere else to turn to. Thank you everyone! If there could be no way to get the protein he needs, then at least you were all here to listen to our story. Have a lovely day!
Well, I've passed all the hurdles and by Mid January 2020 hope to be injected with the Factor IX gene treatment SPK-9001 in a Phase 3 study.
Some Phase 2 results
https://hemophilianewstoday.com/spk-9001/
This will be a worldwide study but quite small, anyone who is also entering this trial, I'd love to trade notes.
Hoping for a miracle in 2020!
- Brian
I'm not saying I want this to happen, but I think it could be interesting.
Maybe Snoke was the precursor to a larger invasion from the Unknown Regions. His species had been planning on invading the galaxy for decades, but they knew they couldn't stand against Palpatine's Empire or against the New Republic (with Luke Skywalker still out there).
So when the Imperial Remnant retreated into the Unknown Regions, they sent Snoke to take command of them and "pave the way" for a quick and easy invasion. But now that Kylo has betrayed him, they need to lead an all-out assault.
While the First Order and Resistance jockey for control of the galaxy, Snoke's army makes their move. This forces the heroes and villains to create an alliance and save the galaxy. When the conflict is finished, a new order could be created.
Again, I'm not saying this is what I want. But I think it could take the franchise in an unexpected direction. One that wouldn't seem like a rehash of RotJ.
TLJ made it seem like the KoR were Luke's former students who decided to "side" with Ben Solo after his betrayal. But what if they were forced into that position? With Luke unconscious, I think Ben probably gave his fellow students an ultimatum: come with him or be slaughtered. Perhaps the weaker-minded ones decided that they wanted to live, so they joined him against their own will.
Maybe that's something that can be exploited in IX. Perhaps Rey will attempt to turn Kylo's own gang against him.
I think a big part of IX is going to be the First Order crumbling from within. Poe will attempt to spur the worlds of the Republic under First Order occupation into rebellion, while Finn perhaps attempts to lead a Stormtrooper revolt. And that leaves room for Rey to try and turn the other Knights of Ren back to the light.
Maybe the trilogy can end with Kylo Ren "surrendering" to Rey. The foundations of the New Jedi Order (Rey and the redeemed Knights of Ren) take him prisoner in an attempt to restore him back to the light. That would leave things open for a new trilogy, and satisfy the "need" for both justice and redemption (as it relates to Kylo).
I love this community and I’m at peace with having hemophilia but i mean at a curtain point I hope you guys don’t think I’m naive for wanted to reduce/get rid of it entirely in the future.
DANISH>English. I would like some assistance translating this patent. I don't need the full 10 pages translated, just a summary and some details. I'm trying to research the process of prothrombin (FII) activation with calcium chloride and its purification process. Any help would be appreciated, thank you. https://worldwide.espacenet.com/publicationDetails/originalDocument?FT=D&date=19920720&DB=&locale=en_EP&CC=DK&NR=0396022T3&KC=T3&ND=5
Has the band ever made any comment on this? I would love to have studio versions of these albums with Bruce, as Iron Maiden and Clansman are some of my favorite songs, but I don’t really like Di’Anno or Bayley’s voice. I would much prefer to have a Bruce version, other than the live ones.
I am Hemophilia b severe, from India, never been transfused. My whole life has been full 9f pain and bleed. The recurrent bleeding in knee and groin almost made me a cripple. Doctors said factor ix injection of 1400IU required for a very long duration. I dont possess financial competency to buy such, I dont even know where to buy those injections. Please help ... ...
Proof: http://i.imgur.com/neMrR.jpg
I have rare blood condition called Severe Hemophilia B. Essentially, this means that my blood does not clot and any bleeds I get do not stop. The only way I can treat this is by injecting myself with synthetic factor.
When I was a kid, I suffered from a subdural hematoma (bleeding between the brain and skull) and I had a 2% chance of living once I was admitted into the hospital. I underwent brain surgery and everything was successful.
Years later, I contracted Hepatitis C from a contaminated factor injection of donated-clotting factor (this was before synthetic factor was on the market). I did not contract HIV, which has been found in donated-clotting factor before. From the late 1970s to the mid-1980s, most people with hemophilia became infected with Hepatitis or HIV from contaminated blood and factor products. I went through a treatment when I was 13 and it cured me of Hepatitis C.
A few weeks ago, I got an itchy scab that I accidentally picked on the back of my neck. I took my hand away and it looked like I had stuck it into the set of Evil Dead 2. There was that much blood.
I'm a 28 year old male living in Atlanta, GA. Living with hemophilia has brought many great challenges, to say the least. Especially with health insurance. Ask me anything!
