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GUEST BLOG: Purple Tramble

My name is Sharmaine “Purple” Tramble but known to many as “Purple.” Currently I reside in Seattle, Washington along with my sister. I went to school at Howard University where I received a BA in Film Production. I recently moved back to Seattle to be with my sister who has been battling a rare disease known as “NMO Neuromyelitis Optica” or “Devic’s disease” for 16 years now. I have seen her faith tested time and time again. She is now 31 and still in and out of the hospital yet we still believe that she shall live and be healed. My sis, my family and I are firm believers. She still thinks of others even in her time of despair. My passion comes from deep within because I want the world to become aware of this rare disease that has stolen years from my sister’s life. It is very painful to see her go through these moments, seconds, minutes, hours, days, weeks and years in a constant battle for her life. It really has changed me for the better and I believe that her story, her faith, her struggle has helped to encourage the lives of all those she has come in contact with. Every hospital, every nurse, every doctor and even other patient’s visitors have all said that they love her. The simple things are all we all want after all… to be comfortable… that is all that we are working for… time to spend just doing simple things. I cherish every moment spent with my sister because I understand that is what I live for. It is an honor to be there for her and to make sure that she is comfortable because I know that she would do the same for me. That’s what sister’s are for.

She was diagnosed when she was 15 years old with Multiple Sclerosis but a year or two ago the doctors found that it was not MS but NMO that was attacking her body. My sister, my family and I are both very happy to venture on this journey to fight for the cure for this rare disease. Please be advised that our journey is not one that is accepting of the prognosis from the doctors but we believe as we go forth in faith, healing not only for my sister but for many others will manifest.

I recently became an Official NMO Advocate joining with The Guthy-Jackson Foundation’s fight for the cure. Neuromyelitis Optica is said to be very similar to MS (Multiple Sclerosis), which has led to numerous misdiagnosis. This was the case for my sister as well. Through this experience my sister and my family’s faith has been tested and tried.

Daughter of Michael and Robin Tramble who are believers and musicians, my sister is also a vocalist and has been singing since she was 5 years old. My prayer is that one day she will be able to sing again. Her story is one of many but ONE that with the help of many will be heard. Caring for my sister has inspired me to start non-profit – Purple Hearts – which focuses on providing education to the community, nation and the world about NMO (Neuromyelitis Optica), MS (Multiple Sclerosis), Autism and Mental Illness. Together along with my video production company “Purple Reels Productions” soon the community, nation and the world will know my sister’s story.

Valuable Links

http://www.huffingtonpost.com/ali-guthy/neuromyelitis-optica_b_1952866.html

An excerpt from Ali Guthy and Victoria Jackson’s new book.

http://ectrims2012.eventresult.com/default/index

The European MS conference with an entire session on NMO.

https://conferencecenter.msworld.org/ectrims-2012/day-three/neuromyelitis-optica

MS World.org conference discussing NMO and how Zrytec, the over the counter allergy med, might help.

HAPPY RARE DISEASE DAY!

Yes, I’d like to think it is a happy day because we’ve all made it one more year.  Living with Neuromyelitis Optica (NMO) can be a real pain so I’m very proud of each and everyone of you in our NMO family for continuing to fight forward and fight together.

This is also NMODiaries 1 year anniversary.  A year ago, Christine, Erin and I started NMODiaries almost as a therapeutic tool.  NMODiaries is place where we motivate each other, have a place to showcase our stories to our family and friends so they better understand our day to day lives and often, a place where we take a moment to laugh at ourselves.  By sharing our lives, we were completely surprised by how many other patients reached out to us to tell us their stories – in an attempt to inspire each other, we were inspired by you.  So, thank you for sharing your lives with us too.

Therefore, in honour of our 1 year anniversary and Rare Disease Day, we asked you, “What was your greatest accomplishment this year?”

“Had twins!  My boys are not just my year’s accomplishment but my life’s.” – Elizabeth Goble Brammer

“Although I’m in a wheelchair 90 percent, I was able to Zipline (9 lines) in Hawaii last February.” – Joni Ignacio Matthews

“I’ve been smoking for over 30 years and had been trying to quit for the last 3. I made myself a promise that I would be smoke free before the Guthy Jackson Patient Day last November and I was able to do it. ” – Lynn Copeland

“My husband reminded me that I did get my motorcycle license, and bought a bike. And, I over came my fear of heights, and went zip lining. ” – Paula Dean-Luce

“I got hand controls installed in my van and got my independence back!” – Tracy Owens

These are just a few of the great responses we received.  For more inspiration, check out the Devic’s Disease group or the My Devic’s Family group on Facebook.

Patient Day 2011

THANK YOU THANK YOU THANK YOU to the Guthy-Jackson Charitable Foundation for arranging yet another successful Patient Day.  Thank you so much for having us and always being in our corner.  Patient Day was a great chance to re-educate and receive new information on Neuromyelitis Optica (NMO).  More than ever, I’m confident that they’ll find a cure one day.  Some exciting stuff I gathered from the event:

• An aquaporin map treatment is in the works to creat good antibodies.  A paper was recently released by Dr. Alan Verkman.
• Talk to your doctors about the flu shot but in general, the benefits usually outweigh the risks for NMO patients.
• Be more active and wash your hands!
• Remember to get regular check ups like the rest of the population (ie. Melanoma could be a side effect of long term use of Cellcept).

Here are a few highlights from our trip:

Jenna

Consortium for MS Centers

I was thrilled to be invited by The Guthy-Jackson Charitable Foundation to help out at the Consortium for MS Centers this year.  The Consortium, which was celebrating their 25th anniversary, was held in Montreal, Canada.  My task: attend the conference, work the trade booth, and create awareness about NMO (NeuroMyelitis Optica).  A quick 40 minute flight from Toronto, this was a rewarding experience.

2 worthwhile things I learned:

• I met a Physical Therapist who worked with an NMO patient suffering from frequent and crippling spasms (I remember them – they were horrible!).  Their treatment plan consisted of Botox injections into the heels of feet to interrupt the signals triggering the spasms.
• “Patient Activation” was a term a MS patient used when she described managing her disease.  We aren’t always motivated to do something, like workout, but if we just do it (patient activation) we’ll find that within a few moments of the activity we find the motivation and can accomplish the task.