Have EDS or HSD? Why MCAS May Worsen Your Symptoms | Dr. Clair & Dr. Harris

Comments · 134

• GY

  @gymdoll2011 · 3 months ago (edited)

  Dr. Harris and Dr. Francamano are absolute champions

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• DE

  @destinywilliams5763 · 3 months ago (edited)

  I dyed my hair and had a horrible systemic reaction I ended up in the ER for 2 days. The chemicals in the hair dye triggered a monster MCAS. I already have POTS. Praying we all get better and drs help us and not dismiss us

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• RI

  @rightsideupsidedown · 3 months ago

  I am so grateful for info on mcas and hEDS and other subtypes, and HSD. Ppl are really not informed/recognize about mcas or EDS, HSD or referred out properly in health care systems and I think really suffer needlessly. These videos will and absolutely do change lives. Thank you, Dr Clair, Dr. Harris, Dr. Thorpe, and EDS clinic. 💓

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• MA

  @mamacitaorozco · 4 months ago

  Both wonderful Drs. Love seeing the collaborative support for our community ❤ thank you

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• TR

  @TraumaTete-a-Tete · 2 months ago

  I really appreciate this conversation. It really helps us when doctors know our condition! I’ve had ER doctors have to “look up” my disease, and doctor education increases our access to more medications-I take (MCAS meds only) 4 Zyrtec, Pepcid, Montelukast, Xolair bi weekly, 2 vile dose of Sodium Cromolyn, epinephrine, and that took years of figuring out meds and dosage. <br>I’m one of the rare folks you spoke of… had bad allergies and asthma all my life, started having autoimmune issues after kids, got diagnosed with Lupus SLE, few years later, I was in hospital twice 9 days apart from idiopathic anaphylaxis. Thankfully I was already under an allergists care who asked me loads of questions and ran labs. I was then diagnosed with MCAS and Sjogren’s Disease. Upon seeing a new allergist, I did genetic testing and MCAS tests again. Again, I’m more rare, but my labs were easily positive for HaTS and MCAS. No one needed to debate about me. I also developed POTS. My mother, and two out of three of my kids all have HaTS too. A year ago, my new rheumatologist diagnosed me with HDS. The pieces I never know existed all fit. Changing meds and lifestyle can only help if you know what you’re working with. I’ve had 4 anaphylactic attacks and all sorts of wild issues that get so much better with treatment, and if you are also an autoimmune patient you have to treat both because they play off each other like a horrific ping pong game and you’re the ball. Thanks so much!!!

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• ME

  @methywoz · 4 months ago

  This is very informative! Thank you for sharing this information and for clarifying this often misunderstood affliction.

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• DE

  @destinywilliams5763 · 3 months ago

  I wish I had this Dr

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• DO

  @DonnaLawson-b1s · 2 months ago

  Insurance companies are an obstacle for treatment.

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• ON

  @onebiteatatime70 · 4 months ago (edited)

  My 13 year old has had food allergies, dermatographia, flushing, eczema, asthma since 16 months old. I asked about MCAS since age 2. I was told its rare and she didnt have it. Fast forward to age 11. She got so sick with dizziness, abdominal pain, high heart rate, trouble eating, swallowing, sleeping, huge purple circles on her legs, pain between her shoulders. She was diagnosed with EOE and dysautonomia. Finally at age 13 she was diagnosed with MCAS after a bronchospasm and spontaneous anaphylaxis while playing volleyball. &nbsp;She is now on treatment and improving. Her tryptase was never elevated but her igg and ige have always been high. We have been in a Pots program and seen by 15 doctors. Not one of them suggested MCAS or advised us to see immunology. I had to seek this out on my own. She has ijssed 2 years of her life. This could have been avoided if someone would have listened to us years ago.<br>She also nkw has been diagnosed with HSD.

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• PA

  @patriciaherlevi6217 · 3 months ago

  Is it possible to have MCAS episodes throughout one&apos;s lifetime and then feel healthy again, only to repeat the condition years later because of being infected by Shingles, COVID, or Lyme?

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• MJ

  @mjcronin430 · 2 days ago

  This was amazing information! Thank you. <br>A major challenge is finding any specialist willing to coordinate care. They refuse. We have currently seen 33 providers so far. We have been discredited, yelled at and dehumanized by several providers part of Tertiary Care Facilities. No one will hear about possible EDS, HSD or MCAS!<br>We already have multiple vascular compression syndromes and ASD (high functioning). <br>So very hard on us.<br>So hard. 😢😢😢

• TH

  @thehansons5 · 4 months ago

  Thank you for the great information! I would love to hear more on mast cells and gynocological issues.

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