Texas Bluebonnet Chapter Newsletter Fall 2013 Meet the President of the Bluebonnet Chapter My involvement with the Foundation started after I was diagnosed with scleroderma and realized I wasn't getting better. I started going to support group meetings and needed to talk to other people that had this rare disease. I wanted to find out what course of treatment they were on and how I could help myself by listening to other people's experiences. My personal goal for the Texas Bluebonnet Chapter is to continue to reach more scleroderma patients throughout the state by offering support group meetings, patient education events, and hold fundraisers that bring family, friends, patients, and local supporters together. My goals for the Board are to have active board members who are passionate about leading & representing our Chapter to increase the programs & services we provide our members and patients; to successfully carry out our 3-fold mission of Support - Education - Research; and to have a financially stable chapter. I can be reached by email - [email protected]or my cell - 972-342-7797 (Meet the rest of your Board on page 2) What's Inside: 1-2 Meet Your Board of Directors 3-4 Scleroderma Stories 5-6 Chapter News & Events 7- Proud Parents 8- Artist’s Corner 9- Scleroderma Spotlight: National Conference October 12, 2013 - 10:30a.m.... El Paso Patient Event Featuring Dr. Garcia - Pulmonologist United Blood Services - 424 S Mesa Hills Dr, El Paso, TX 79912 Contact: Virginia Browne at [email protected]October 12, 2013...San Antonio Walk Woodlawn Lake Park Contact: Jovana Desarden or Cynthia Julson at [email protected]October 19, 2013 8:30-12... Gulf Coast Patient Event Conroe Regional Medical Center-504 Medical Center Blvd, Conroe, TX Contact: Virginia Browne at [email protected]Texas Events at a Glance Updated Support Group Contact Info To get in touch with your local support group leader please click HERE. Get Connected! Texas Bluebonnet Chapter San Antonio Facebook Page Corpus Christie Facebook Page Scleroderma Foundation Facebook
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Texas Bluebonnet Chapter Newsletter Fall 2013
Meet the President of the Bluebonnet Chapter
My involvement with the Foundation started after I was diagnosed with scleroderma and realized I wasn't getting better. I started going to support group meetings and needed to talk to other people that had this rare disease. I wanted to find out what course of treatment they were on and how I could help myself by listening to other people's experiences. My personal goal for the Texas Bluebonnet Chapter is to continue to reach more scleroderma patients throughout the state by offering support group meetings, patient education events, and hold fundraisers that bring family, friends, patients, and local supporters together. My goals for the Board are to have active board members who are passionate about leading & representing our Chapter to increase the programs & services we provide our members and patients; to successfully carry out our 3-fold mission of Support - Education - Research; and to have a financially stable chapter. I can be reached by email - [email protected] or my cell - 972-342-7797
(Meet the rest of your Board on page 2)
What's Inside: 1-2 Meet Your Board of Directors
3-4 Scleroderma Stories
5-6 Chapter News & Events
7- Proud Parents
8- Artist’s Corner
9- Scleroderma Spotlight:
National Conference
October 12, 2013 - 10:30a.m.... El Paso Patient Event
Featuring Dr. Garcia - Pulmonologist
United Blood Services - 424 S Mesa Hills Dr, El Paso, TX
I got involved in the Scleroderma Foundation through a friend. My personal goals for being on the board include to the assist board with parliamentary issues and training. I would also like to provide the best service to Texas patients as they deal with the scleroderma through support and education
I became involved with the Scleroderma Foundation, after my sister was diagnosed with Systemic Scleroderma. When she was diagnosed there was no way that I could sit by and not try to help in some way. What is my personal goal while on the board? It is to make sure I have done everything I could to have record donations made to the Scleroderma Foundation and that I have done my part to help the questions about Scleroderma and have the answers for those that are not educated about this horrible disease in order for there to be more compassion for those who do. As a Board we definitely have some hurdles to overcome but I know that we can do it. We know that we have our work cut out for us as there are still patients out there that have not yet joined a support group or reached out to us so that we can help them find a group near them. We have a lot of ideas, please reach out to your board and we will help you get setup and guide you through the process.
I was asked to become involved by Virginia Browne. I know Virginia from our work together on the Board of Directors of Texas PTA. My daughter, my daughter-in-law, and I all three have autoimmune diseases. I understand the difficulties we all face on a daily basis. The Board should be working to get information into areas where very little support exists.
My personal goal for the Texas Bluebonnet Chapter is to continue to reach more scleroderma patients throughout the state by offering support group meetings, patient education events, and hold fundraisers that bring family, friends, patients, and local supporters together. My goals for the Board are to have active board members who are passionate about leading & representing our Chapter to increase the programs & services we provide our members and patients; to successfully carry out our 3-fold mission of Support - Education - Research; and to have a financially stable chapter.
"You have Scleroderma." At the age of 14, I had never even heard
such a word. My symptoms of cold fingers and skin changes
started the year before, in which doctors kept saying to "stay
warm" and "stay out of the sun." My mother knew there was more
going on than just being cold.
I was forced to quit playing softball and volleyball in high school
because my hands were starting to stiffen up and curl in. My
joints were inflamed, I wasn't able to swallow my food and it was
difficult to walk. Soon after, I couldn't even jog a few blocks due to
the severe shortness of breath. When doctors realized that
Scleroderma was causing fibrosis on my lungs, they immediately
started me on several toxic drugs to try and slow down the
progression. At the rate this was going, I was told I wouldn't live
past the age of 19.
Fast foward a years, after numerous hand surgeries,
hospitalizations, and years of IV infusions my lung involvement
was considered "stable". Or so we thought.
I was frustrated and angry with seeing every doctor in the book,
being in every hospital, taking so many medications for this
disease all to just be stable for short periods at a time. I just chose
to live and cope the best way I could. I was getting married and
had already had a son. My wonderful life seemed to distract my
symptoms for some time.
Fast forward a few years, after numerous hand surgeries, hospitalizations, and years of IV infusions
my lung involvement was considered "stable.” Or so we thought.
I was frustrated and angry with having to see every doctor in the book, being in every hospital,
taking so many medications for this disease all to just be stable for short periods at a time. I just
chose to live and cope the best way I could. I was getting married and had already had a son. My
wonderful life seemed to distract my symptoms for some time.
Early 2007 was when I hit rock bottom. Getting around in mostly a wheelchair and on oxygen 24hrs
a day, I didn't even look the same. I remember the look on my doctor’s face when he told me there
wasn't anything left that he could think of to help with the lung involvement. I thought to myself
"That isn't true!" I have my whole life ahead of me; all I prayed for was to be a mother and a wife.
I was sent to see Dr. Burt at Northwestern Memorial Hospital in Chicago. He was conducting a study
using healthy stem cells that were showing to reverse or possibly pause the progression of
scleroderma. The study consisted of intense chemotherapy, injections, isolation, and an almost 3
month stay in the city.
I promised my son and my family that I would return home a healthier person. I kept that promise
to my family and just completed my final follow up visit this past November. Instead of my lungs
being "stable" they have improved. I consider having scleroderma a blessing to me. Despite
enduring such pain and setbacks, I find joy and fulfillment in having met so many people in the past
17 years. With pain comes strength, and I choose to LIVE my life one day at a time. I am now one of
the support group leaders in San Antonio. I love our group so much; we are family, and I wouldn't
want anything different.
Scleroderma Stories
Scleroderma Stories
Best-selling author and columnist @Mitch Albom lost his friend
Steve Nickerson to scleroderma earlier this year. He writes
about Steve and his 10-year battle with the disease in last
month’s Free Press. He shares in painstaking detail the damage
scleroderma can wreak on patients. Now it’s our turn. Share
this story today and spread awareness about scleroderma. It’s
a rare opportunity to educate people about a rare disease. Let’s
seize it. Help others know scleroderma.
http://on.freep.com/14quags
Steve Nickerson and Free Press columnist Mitch Albom
Steve Nickerson
Denise Hinojosa San Antonio, TX
I was diagnosed with Scleroderma in January 2007. I had been trying to figure out why my feet were swollen, my body was stiff and my hands would tingle. I saw one doctor for 6 months and was constantly doing blood work and then she stopped returning my calls. She just gave up, but I knew I couldn't. Luckily, I chose a doctor close to home and on my first appointment, he diagnosed me with scleroderma, no blood work needed just a simple handshake was all it took. I hadn't realized my skin was tightening. Then he dropped the bomb, saying most scleroderma patients only live for 5 years, and there was no cure. (Something that just isn't true anymore!) I went to work crying that day, wondering what I would do. My scleroderma progressed pretty quickly, making my entire body stiff including my face, which made it fun to eat. I tried different medications, and nothing worked for me until I tried the antibiotic therapy, which worked wonders and most of my skin tightening reversed except for my hands. In 2011, I started asking my doctors about pregnancy and I was happy that they all agreed there was no reason not to proceed. I am happy to say I gave birth to my daughter on February 7, 2013 and had no complications during my pregnancy or labor that were scleroderma related. At times I felt cursed for having scleroderma, but now it only makes life all that much sweeter because I value everyday and every accomplishment so much more.
Saturday, October 12th 2013 Woodlawn Lake Park, 1103 Cincinnati Ave., San Antonio, TX Registration Time: 7:30 a.m. - 8:30 a.m. Balloon Release: 8:45 a.m. Walk Time: 9:00 a.m. This is the first walk/run for San Antonio, and we are excited to
have it in such a great big city. Gather your friends and take
pledges to complete the walk or run. You can participate solo or if
you have a team. We will have prizes for most raised funds,
individual, and most funds raised for teams. Come up with
something creative, team name, team costumes, themes or most
awareness. We will have plenty of activities for the kids to do, so
bring all your friends and family. Also, we need as many volunteers
as we can get!
Be a part of the Foundation's largest fundraising events. Because
of generous donors, volunteers and participants – just like you –
we are able to get one step closer to finding a cure for
scleroderma.
For more info/To register: www.scleroderma.org/SAwalk
Brenda Quintanilla On March 16, 2013, Gabrielle (Abby) Quintanilla celebrated her Quinceañera (15 years). Abby was born on March 26, 1998 in San Antonio, TX. She resides in Karnes City since birth. At the age of 5, she was diagnosed with Systemic Scleroderma & Raynaud’s. At that time, the doctor was unsure how she would respond to treatment, but as of today she has remained stable due to her medications and faith. It has definitely been trying for her, knowing that she was different than other teenagers. She takes numerous medications, and needs more rest then other teens. She, however, has never let scleroderma take control of her. She has participated in dance classes, youth cheerleading, youth basketball, and youth golf. In 8th grade she was ranked #1 in a class of 65. She now is currently a freshman, where she plays the saxophone and is a twirler in the band. She also participates in UIL events such as News Writing and has advanced to regionals. Abby also devotes her time to her church by attending, serving as an altar server and helping with vacation bible school. I am very proud to say that Abby is my daughter. I know that she faces many challenges, as well as everyone who has scleroderma. I hope that one day a cure may be found and help ease the pain of all those who suffer. Thank you so much for your help to help raise awareness and over $1600 to help find a cure!!
Shannie’s BBQ Fundraiser
Julie Carnline’s daughter, Shannon (Shannie to everyone who knows her) was
diagnosed with morphea back in 2008. Two years ago, Shannie was able to
receive UVA-1 phototherapy treatments in Dallas and, while we were living
there, she decided she wanted to start a camp for the other kids who have
scleroderma and their families! It has taken two years for God to guide us to
the right path, but since January things have really been moving. We have been
able to set up a nonprofit organization - Camp Diasozo - we have filed for our
tax exempt status and now we're working on our first big fundraiser. It's been
exhausting and exciting all at the same time!
Camp Diasozo hosted a BBQ fundraiser on Sunday, June 9th from 3-9 p.m. at
the Encino Park Community Center and extended an invitation to everyone in
the scleroderma support group and their families! They had a BBQ dinner
available, live music, a silent auction, a raffle, giant Jenga and ring toss games,
horseshoes, volleyball, cornhole, popcorn and peanuts for sale, and even a
cotton candy machine for the day!
For more info on Camp Diasozo visit: www.campdiasozo.org
Artist’s Corner
In this section we would now like to include images,
artwork, poetry, short stories etc. that help you
express how you and/or your loved ones live with
and manage your scleroderma.
If you have something you would like to share in the