Can I give/donate blood if I have Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD)?
Each person wishing to give/donate blood will be assessed to see if they are suitable based on their health, however, many may not be considered well enough.
Reasons to exclude a person from giving blood include:
- If you are receiving medical or hospital treatment
- If you are taking medication
- After traveling internationally
- After having a tattoo or piercing
- During and after pregnancy
- If you feel ill
- If you have anemia, low iron, or low blood pressure
- If you have cancer
- After receiving blood, blood products, or organs
Risks of blood donation can include:
• Venous access – typically a large bore needle is used
• Risk of bruising
• Risk of worsening symptoms of POTS or orthostatic intolerance
(loss of circulating blood volume)
Can I be an organ donor if I have EDS or HSD?
If the situation arises upon death, doctors will examine your organs and determine whether they are suitable for donation.
There is very little in the biomedical literature about organ transplantation in the setting of Ehlers-Danlos syndrome and nothing about hypermobility spectrum disorders. Much more research is needed about the experience of persons living with EDS and HSD who receive organ transplants, and about the success of organs transplanted from persons with EDS and HSD.
In the United Kingdom, The Joint UK Blood Transfusion and Tissue Transplantation Services’ professional advisory committee states that in terms of Ehlers-Danlos syndrome, they will not accept organ transplantation from anyone with a diagnosis of EDS. There is one exception which is pancreatic islet cells. The pancreatic islet cells are harvested from the pancreas and infused into the donor, similar to a blood transfusion. For that kind of donation, there is no concern about tissue fragility and the risks of a surgical procedure.
In regards to organ transplantation, tissue fragility in EDS is a major consideration and could impact the success of transplantation. This is particularly true for vascular Ehlers-Danlos syndrome (vEDS) but is seen in other types of EDS as well. Mast cell activation may also play an important role in the success or failure of a transplanted organ. This may be true on both the donor and recipient side of the transplant.
Can I donate my body to medical science to have EDS or HSD studied at the time of my passing?
We are not aware of any researchers using the bodies of those with EDS or HSD for research at this time, however, we encourage you to look at www.clinicaltrials.gov to see what is currently being studied.
Many universities with medical schools have programs for accepting bodies for medical research. Each school has its own applications and procedures to follow, so contacting the one you choose to find out their protocol is advisable. Another option would be to donate tissue from surgeries to the National Disease Research Interchange (NDRI). They supply tissue and organs to researchers around the world. You may be interested in the fact that they have launched a Rare Disease Initiative in the hopes of having tissue and organ biosamples available to researchers studying rare diseases.
Thank you for your generosity to all of us in considering these options.
Dr. Clair Francomano’s References: