Link Appendix

Link Appendix

General MCAS (Mast Cell Activation Syndrome) Info

Wikipedia- Mast Cell Activation Syndrome- this link provides a general overview of Mast Cell Activation Syndrome, and covers the basics.

Mast Cell Aware- About Mast Cells- this link is a general description of what mast cells are, and what they do. This page discusses the role of mast cells in allergic diseases, anaphylaxis, autoimmunity, and reproductive disorders.

MastAttack- this website is an invaluable resource for anybody wanting to learn anything about MCAS or mast cells in general. It is written by a working researcher from a scientific perspective, and someone who is also a mast cell patient herself. This website is rich in information and scientific language and knowledge, so it takes some time and effort to comb through to find the information you want. I will post some more specific links within mast attack.

MCAS Laboratory Testing- discusses the difficulties in obtaining MCAS laboratory testing and reliable results, as well as tests to request from your physician if you suspect you may have mast cell problems.

Mast Cell Disease Fact Sheet- also by the creator of MastAttack, talks about the different types of mast cell diseases. MCAS is a type of Mast Cell Disease.

Mast Cell Mediators- also from MastAttack, a list of articles about the different mediators (chemicals) that mast cells release, and their function.

MCAS Treatment Options

Xolair (Omalizumab) Wikipedia- Xolair is a medication that I have been on since the start of my MCAS symptoms. I used to get it injected every 2 weeks, and it helps alleviate symptoms for about a week and a half. As of May 2016, I stopped Xolair due to reactions.

Gleevec (Imatinib) Wikipedia- Imatinib is an oral chemotherapy drug, but in low doses, has been successful in a few MCAS patients. This helped me for a while, approximately 8 months.

Cheyanne's Blog about starting the CDI, or Continuous Diphenhydramine Drip (Benadryl Pump)- see description above.

Mediport (Wikipedia)- about what a Mediport is, which is a central line that was implanted in my chest. It provides IV access.

MCAS and POTS/EDS

MCAS & POTS- This article is a great resource which discusses the connection between MCAS and POTS.

Misbehaving Mast Cells in POTS and Other Forms of Dysautonomia- a video explaining how POTS and MCAS interact and create complex feedback loops.

POTS (Postural Orthostatic Tachycardia Syndrome)

Dysautonomia International- this website is the home of Dysautonomia International, the leading foundation for diseases of the autonomic nervous system. POTS is a form of dysautonomia.

Sjogren's Syndrome

Info from the Mayo Clinic

Chronic Illness/Disability Awareness

The Mighty- The Mighty is a website with a compilation of hundreds of articles about a range of chronic illnesses, mental illnesses, and other disabilities. I have found many of their articles to be very helpful, and if you search, there are even quite a few on POTS, MCAS and EDS!

5 Things Not to Say to Someone with a Chronic Illness- These really ring true for me, and I hope others may find this helpful as well.

Scientific Articles about MCAS and Treatments

Pharmacological treatment options for mast cell activation disease- this is probably the most comprehensive article I have read about MCAS and its treatment.

Utility of Continuous Diphenhydramine Infusion in Severe Mast Cell Activation Syndrome- an article about starting and using the CDI, the benadryl pump I am on.

Continuous diphenhydramine infusion and imatinib for KIT-D816V-negative mast cell activation syndrome: a case report- this is a case study of an individual who looks nearly identical to myself and is on very similar medications.

Research Organizations and Non-Profits Related to MCAS, POTS and EDS

Mastocytosis Society- although this says Mastocytosis, the Mastocytosis Society does research and education for all mast cell diseases, including MCAS. I am a member (which is free), and they provide a lot of great resources and information.

Dysautonomia International- an organization which does fundraising, research, and education for dysautonomia, including POTS (Postural Orthostatic Tachycardia), which I have. They also have  lot of really great resources I have been able to utilize, and advocacy.

Ehlers Danlos Society- another great resource for EDS.