Hello all. My name is Angalee, im 23. Had my first attack in August 2015, had many many trips to the ER. Many stays in ICU. Finally my hematologist found it. He says im lucky to be alive and don't even know how I survived the attacks and handled them so well. It went from episodes every other week to every two days very quickly. Each time my blood pressure bottoms out and im found passed out or start to lose consciousness. I vomit, heart pounds, and my body aches every where. He started me on prednisone (steroids)because we are battling with the insurance company to approve my infusion of IVIG. Haven't had an attack since ive been on the steroids but he says i cant stay on them much longer. Last attack was December 28,2015. Im scared and angry, and want to continue with my education and help people in need. Any support or suggestions are greatly appreciated. Much love. Angalee ~~~

Angalee, Welcome to our Community! Here you will find a great deal of information and also the companionship and moral support that we all need. I started this forum in mid-2008 precisely because I was starving for all of those things, and having even just a few members made a huge difference to me in every way. This illness typically affects middle-aged adults, and that's bad enough, but when we discovered that there were some children afflicted and also some people in their thirties, our hearts went out to them. I'm sure you feel overwhelmed, being as you are in the prime of your life, and my heart goes out to you. So here are 2 suggestions. First, have your hematologist look through this site, especially the tabs "Disorder Details" and "Disorder Resources." Insist that he contact Dr. Kirk Druey at NIH ASAP by telephone and/or email -- the information is there, at the bottom of the "Disorder Details" tab, in order to have your diagnosis confirmed, and if so to get his help in having the IVIG approved. You will need to authorize him to discuss your case, send over your medical history, hospital records, and blood samples from any other episodes you endure. Second, go through this site yourself, checking our those same sections plus a number of the Discussion Forum topics. You must become educated as to this condition, in case you really do have it and need to live with it, and you will find comfort in the fact that others have gone through what you have gone through -- and then some, sustaining permanent damage to limbs and vital organs. You will find comfort in other people's stories of survival and adaptation.

Hi Angalee, I am so sorry to hear of your illness. Arturo, our community expert has given you the advice and direction needed. Please be diligent as you are fighting for your life. The good news is that thanks to Arturo and Dr. Druey and others progress has been made and help is available. There is a good chance that with the right treatment you will be ok. If it is SCLS that you have this means the IVIG infusions and you and your doctor need to fight for that and the sooner the better. I wish u luck and much encouragement! Linda

Hello Angalee, First, all power to you to deal with this condition! Second, join with our community through dr druey Third, try to add to our community through sharing your experiences.... We are all going through a learning experience, and need YOUR input. We need to understand warning signs, treatment, interface with the medical world, joys of survival, and share any grieving. We are a community. John

Hello all, thank you so much for your support and replies. I have been really trying to avoid thinking about and facing this disease, just an update, i had a port placed, was scheduled to start IVIG but my hematologist and I decided to hold off because i have not had an attack since 12/27/15. Since that attack ive been on prednisone, first 20mg, then tapered down to 5 mg daily for the past few months now, so far so good. I have been in touch with the NIH and awaiting approval to go see dr. Druey. I am trying to not get to comfortable and try to come to terms with this and hopefully network with other patients to learn more about this disease. Im also waiting to go see a new doctor at Mayo clinic here in Jacksonville fl, since my doctor that diagnosed me moved, he is truly a blessing and an amazing man, i feel that he saved my life, as i was having 2 attacks per week untill he took control and diagnosed me, i will forever be grateful for his presence in my life. im scared for what the future holds and what my new doctor will suggest. If anyone has any suggestions or support id really appreciate it, and id really like to stay more in touch with "our" community. Thank you so much for all the great information, Angalee

My husband was having attacks every two years (4 total before being diagnosed), so don't get comfort in the fact you haven had one since 12/27/15. If you truly have SCLS then regardless of when your last attack was you need to be on IVIG. Get in to see Dr. Druey.

Steroids like Prednisone can shorten and possibly prevent episodes of SCLS, but long-term reliance on steroids will do serious damage to your body -- and weaning yourself off of steroids will likely make you susceptible to renewed episodes of SCLS. Therefore, it behooves you to move on to a more effective and beneficial course of therapy. Do not play "Russian Roulette."

Hi Angalee, Could you send me the name of the Doctor at Mayo in Jacksonville? I am going to see Dr. Kapoor at Mayo in Rochester MN. I started on IVIG in 2010 it work fine until this past year. I am going to Mayo to see if they can help me with a care plan. I hope things go well for you.

For those of you in Florida and near Jacksonville, I would also recommend my doctors at the University of Florida in Gainesville, Florida to you. They are: Dr. Heather Harrell and Dr. Bradley Fletcher. Both have become very knowledgeable about SCLS and the IVIG treatment. And both have communicated and coordinated with Dr. Druey on my treatment. Davec

Angalee, Dr. Candido Rivera at Mayo Clinic Jacksonville confirmed my diagnosis and Dr. Anju Vasudevan in Ocala saved my life in January 2015 and has overseen my IViGG infusions ever since. I highly recommend both of them. Where are you in Florida? I would be happy to help introduce you to Dr. Vasudevan. Susan

Hi Angalee First I like to say happy birthday to you her in Italy it's 26/04 Hope my best wishes to you , I start with Ivig at 2010 and every thing is ok I asked God to be too near from all us to be the power to our life trip Welcome in our community Yaser

Hi Angalee,I cannot stress the importance of heeding the advice being given in regard to you receiving ivig,the evidence is quite overwhelming that this treatment is the only effective treatment to prevent further attacks. I myself am in a continuing battle with the NHS in England to continue with my treatment. I think you have been quite fortunate that you have not suffered further complications from your attacks (perhaps your relatively young age has helped you there). Please do your utmost to receive the best possible care for this condition,a little research will,im sure, convince you that Ivig is the way forward. I wish you well.

Hi Angelee, Please take the advice of others and be proactive in seeking treatment. If u have SCLS then IVIG is necessary for prevention of episodes. If u read thru the topics you will see that there is a vast difference in frequency of episodes. The common thread is that it only takes one to kill you. As Arturo said doing nothing is playing "russian roulette". If u read thru the past 16 mos of topics in the discussion forum u will see one called "Guy Allen Overland" which I started after I lost my beloved brother last year. He is the last to have passed from SCLS in our community and I would like to keep it that way. His episodes were infrequent but severe and when he was diagnosed 12 years ago we did not know about IVIG. He was told by the Mayo clinic to try an experimental treatment with theophylline and this was fairly successful and because his episodes were so infrequent he hesitated to switch to IVIG. Others that at frequent episodes had no choice and it has saved many lives. He had finally decided to switch to IVIG but passed away from a severe episode a week or so before he was to see Dr. Druey about it. Arturo and Druey were with him daily during this final episode and they tried everything to save him. It is a horrible way to die. I had been his healthcare advocate and had been available for every episode and we had saved him except for this last one. My brother had also dabbled with prednisone in the couple months prior to his death and I had cautioned him about this. I don't know if that is why this episode came with such a vengeance but it something that bothers me. Do not be lulled into a false sense of security. Dr Greipp at the Mayo clinic in Rochester,MN who is now retired was who diagnosed my brother 12 years ago. I will never forget his words. He said " we don't know why this happens and we do not know when it will happen again but the one thing we do know is that it WILlL happen again". All we could do is be ready with written copies of the protocol to be followed which is listed under " disorder resources" and pray that the emergency room would listen. Thankfully now many emergency personell are aware of SCLS and we have IVIG which means the episodes are not happening for the majority of those who take it. Many of those that were in crisis for years do not even post anymore because they have gone on to live normal lives thankfully. My brother lived a very full life and even though he had fasciotomies of all limbs he worked full time for the National Endowment for Democracy and travelled the world. He did not like to read posts on rareshare about SCLS because it was a reminder of his disease so I did it for him. In hindsight maybe I should have encouraged him to do it himself just as others have encouraged you to do so. Maybe he would have started IVIG sooner although I had been pushing for him to start it for some time. Please educate yourself and your family and get the treatment you need ASAP. Hesitation could cost you your life. My thoughts and prayers are with you. Linda