Comments on: What a difference a year makes

By: js

js — Fri, 19 Nov 2010 21:30:46 +0000

Tina,

I’m so, so saddened to hear this and terribly sorry for your loss. It is so tragic to lose someone so young. It’s *not* normally a syndrome that affects people who are so young, which also must have made it harder for the doctor’s to diagnose it. It was an incredibly frustrating process to get a diagnosis for my Churg Strauss, it took months to get a diagnosis. The symptoms are so varied and unusual that most doctors don’t understand it at all. Even today, when I meet a new physician, they ask me what to look for. I have to tell my doctors to look at my eosinophil count because it’s not something they normally pay attention to. For me, major symptoms have receded, but I still have tinnitus in both ears and frequent ear infections. Of course, it’s terribly inconvenient and painful, but I feel fortunate.

I have a 30-month old son now, and I’m thankful that I got diagnosed before any major damage occurred. As a parent, I am deeply affected by your story. And frustrated and angry, too. Our medical system is so much better year after year, yet doctors and hospitals continue to make errors that shouldn’t be so difficult. They’re human, I get it, but still, it’s so frustrating and tragic.

I hope you heal soon and keep your daughter’s memory alive and remember all the wonderful times in her life.

By: Tina

Tina — Fri, 19 Nov 2010 19:40:11 +0000

Hi John, I am really glad to hear that you are doing well. Sadley, my 21 year old daughter was not properly dioagnosed and passed away August 14th of this year. I do not understand why , she displayed all the symptoms, asthma that was worsening, ear infections, 2 sets of tubes put in her ears, congestion, coughing. Her last visit to an ER, they kept her for phenomonia, but within days her lungs, heart and kidneys, were already displaying nicrosis. It really hurts to know that with a proper dioagnosis, I could have had her with me a lot longer. She had been displaying health problems for about a year, it seemed to go very fast. I hope I am not upsetting you, I truely wish you health and happiness. I just needed to hear from someone who is experencing this disease first hand, and could possibly share any information with me would be greatly appreciated. If not I understand. Thank you for reading this, TIna Bennett my daughter was Erika Bennett.

By: afulford

afulford — Thu, 05 Mar 2009 13:27:39 +0000

I read this blog with huge interest and can relate to it totally. My mother came down with Churg Strauss a few years ago and it was an extremely traumatic experience. She also started with various ailments such as asthma, rashes and cramps and got progressively worse and we had no idea what it was (neither did the doctors). It finally got so bad and she was in such severe pain that we had to call 999 (we’re in the UK) and an ambulance rushed out. It took 9 specialists to come up with the diagnosis and after treatment she made a recovery. Unfortunately she did suffer some neural damage in her feet, which causes some trouble from time to time, and she still has the asthma but other than that she is back to her normal healthy self. I think the worst part was the not-knowing – watching someone you care about get progressively sicker and not having any explanation or anything you can do to help.

By: Elaine

Elaine — Sat, 24 Jan 2009 18:07:24 +0000

Hi All,

Recently been diagnosed with CSS (Sept 08), been on Cyclophosphamide for 3 months intraveneously as well as Prednisolone (down from 60mg to 15mg to date). Started Azathioprene but am aggressively intolerant to it (severe sickness etc) so am awaiting consultants advice as to what is next.

Unless you have this syndrome/disease no one understands the kind of toll it takes on your body and mind. Extreme tiredness, dizziness, heart palpitations (my heart was involved also), the list goes on and on… Although I am determined to be well again.

I am in the UK and my health care practitioners are second to none. The Cardio Consultant that I had the good fortune to attend me (Thank God for him) when I was first admitted to hospital, came up with the diagnosis. He saved me from severe internal damage and possibly even death. Its lonely having this condition and Lew, I couldnt agree with you more, health professionals should make more people aware of this disease and the signs and symptoms to look out for.

I wish you all continued Good Health because, if you have that, you undeniably have everything!

Elaine X

By: bluecollar49

bluecollar49 — Tue, 23 Sep 2008 18:42:36 +0000

Hi John.

A positive story, and one that I can relate to…I was diagnosed with CSS back in June, came out of the hospital with 12 different meds and now I’m down to 3 including one for the asthma.

Actually just came back from a long delayed (26 years delayed )honeymoon in Maui also.

I’m on pred and a drug called Immuran, which was a step down from the Cytoxan I was originally prescribed.

Anyway, I have started a blog about CSS, because I am finding that most folks are not aware of this disease and I think that people should be made aware that this disease exists and what to look for.

Lew Newmark

By: Bruce

Bruce — Sun, 06 Jul 2008 18:09:50 +0000

For information and support, see http://www.vasculitisfoundation.org

By: Austin

Austin — Thu, 19 Jun 2008 22:49:52 +0000

What an incredible story. I think we all take our good health for granted at times until we read a story like this. Thanks for sharing!

By: Jon

Jon — Fri, 09 May 2008 03:13:30 +0000

Thanks for commenting, Kevin. Maui sounds like a good 2nd year anniversary, thanks for the idea!

By: Kevin

Kevin — Fri, 09 May 2008 01:06:47 +0000

Very positive story. I’m nearing the 2 year anniversary of my diagnosis with Churg Strauss and it is very similar to yours (except I had heart involvement). It truly is amazing what a difference a year makes – my wife and I (and my parents) spent my one year anniversary snorkeling in Maui… it was a wonderful, symbolic life-affirming event. Now a year later, we have a four-month-old son and life goes on as it always has. Prednisone truly is a wonder drug – people can complain all they want about weight gain and night sweats, but the fact is that it is our lifeline. It is incredible how a dose of prednisone can take me from outright sick and asthmatic back to perfect health in 90 minutes. Congrats on year 1 – its good to know there will be many more to come.