April 2017 Kansas City Support Group Meeting

Apr 02, 2017


…and what they can do for you!

Have you ever thought about attending a support group meeting in your area?  Then you thought, I’m not sure about going because I’m not sure what to expect or people may not understand what I’m going through. . . . . . . .

The Kansas City TMS Support Group recently held our first all-day meeting on Saturday, April 8, 2017. What started off 3 years ago with 5 patients and 5 caretakers has grown into a group of friends, supporters, and a strongly bonded team. This recent support group meeting consisted of 38 people (50 are registered with TMS from this area). Most were from the Kansas City area but others attended from Illinois, Missouri, Oklahoma, Wisconsin, and Minnesota. There were patients and caregivers, first time participants and repeat members. There were people in attendance who had recently been diagnosed and others who have felt isolated for years. Some participants had MCAS and others had Mastocytosis. No matter where they were in their journey, they were all seeking support, education, hope, a chance to be understood, and an opportunity to connect with others who were experiencing what they were going through.

We were fortunate to have Dr. Theoharis Theoharides provide education on mast cells through a presentation and a Q&A session. We were able to provide separate breakout sessions for patients and caregivers. This allowed both groups to discuss and to share concerns and experiences on a different level and from differing perspectives. Finally, there were breaks, lunch, and times to socialize which allowed participants to talk one-on-one and connect with each other.

Here’s what some who attended the Kansas City TMS Support Group meeting had to say about their experiences:

  • “I don’t know why or how lucky we were to be able to attend the meeting yesterday. We are still dumbfounded at the lengths that people put into coordinating and rearranging their lives to make this event happen. Nothing short of amazing! Then to top it off, to hear from an incredible (maybe the best) person on this topic was unbelievable. A brilliant medical professional just sharing information, answering questions…. just wanting to help strangers. We are humbled by the care and support of you, Dr. Theo and others. Brenda and I were touched deep in our souls!”
  • “The presentation by Dr. Theo helped me have a more in depth understanding especially of treatment options. The sharing among us was both helpful and gave me a heavy heart especially for those who have more severe symptoms than I do. I realize I need to make some hard choices in how I care for myself. There was obvious caring about one another and willingness to share anything that might help others. I appreciated that it was a full day dedicated to one another.”
  • “Today was an amazing, big step in our RARE disease journey, we finally met a Dr. that understands and cares!! God bless you Dr. Theo!! We gained so much knowledge and hope today. I am so thankful for this. I’ve prayed for this day and this meeting and it was so good. Of course, it’s still complicated and we don’t have any definite answers BUT so good to find a Dr. who is willing to dig for her and our whole family. I love that doctors like him exist, but sad that they are RARE due to lack of funding.”
  • “I’m so grateful to TMS for offering these support meetings. I found the meeting very informative and the support that was offered meant so much to me. I was very isolated with this illness before coming across TMS and these meetings.  They have given me hope that I can get better, and being able to talk to people that understand makes me feel that I am not alone in this battle.   I also loved how the supporters/caretakers were able to have a meeting together to share frustrations and ideas on how to improve their lives.  Thank you so much for all you do, you are making such a difference in the lives of people that live with Mastocytosis/MCAS.”
  • “I wanted to thank you for the most amazing meeting in Kansas City this past week. This is the first Masto event I have been to besides the support group meetings we have pulled together locally. Dr. Theo is amazing, how lucky was are to have him.”
  • “It was really great to have Dr. Theo come to K.C. MO and talk with us. It is not always easy to travel a long distance to go to the National meeting because of stress of traveling as well as financial aspects. Those who were new to our group benefitted greatly by being able to ask questions as well as having their questions answered during Dr. Theo’s presentation. It is also great to get to know others and share information with each other. My mom was really impressed that Dr. Theo would take the time to come and talk.”

So, the next time you have a chance to attend a TMS support group meeting/event GO FOR IT! 

You might be surprised about what you walk away with.   More importantly, you might be surprised about what you have to contribute!

Please check www.tmsforacure.org “SUPPORT GROUPS” tab for all information on local support groups.

See photos of the meeting!   https://tmsforacure.org/community/gallery/

Rita Barlow, TMS Support Group Chairperson

Cheri Smith, TMS Support Group Leader